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Commission Meeting of February 25, 2009 - Notice of Proposed Rulemaking Implementation of Title II of the Genetic Information Non-Discrimination Act of 2008

TRANSCRIPT


PRESENT:

STUART J. ISHIMARU Acting Chairman
CHRISTINE M. GRIFFIN Acting Vice Chair (via Conference Call)
CONSTANCE S. BARKER Commissioner

ALSO PRESENT:

JAMES LEE Deputy General Counsel
PEGGY R. MASTROIANNI Associate Legal Counsel
BERNADETTE B. WILSON Program Analyst

This transcript was produced from a video tape provided by the Equal Employment Opportunity Commission.

TABLE OF CONTENTS

BERNADETTE WILSON

Notation Items
Vote to Close a Portion of the Next Mtg Approved

CHRISTOPHER KUCZYNSKI

Assistant Legal Counsel
Implementation of Title II of Genetic Information Non-Discrimination Act

PANELISTS

Susannah Baruch
Director of Law and Public Policy, Johns Hopkins

Jeremy Gruber
National Council for Responsible Genetics

Rae Vann
Shipman & Goodman

Karen Elliott
Society for Human Resource Management

Andrew Imparato
AAPD

QUESTIONS FROM COMMISSIONERS

P R O C E E D I N G S

ACTING CHAIRMAN ISHIMARU: The meeting will come to order. Thank you all for being here. In accordance with the Sunshine Act today's meeting is open to public observation of the Commission's deliberations and voting.

At this time I'm going to ask Bernadette Wilson to announce any notation votes that have taken place since the last Commission Meeting, Ms Wilson?

MS. WILSON: Good morning.

Congratulations and welcome to our new Acting Chairman Ishimaru and Acting Vice Chair Griffin and Commissioners.

I'm Bernadette Wilson from the Executive Secretariat. Acting Vice Chair Griffin will be participating by telephone. Acting Vice Chair, are you there?

ACTING VICE CHAIR GRIFFIN: I am here.

MS. WILSON: Great. We'd like to remind our audience that questions and comments from the audience are not permitted during the meeting and we ask that you carry on any conversations outside the meeting room departing and re-entering as quietly as possible.

Also, please take this opportunity to turn your cell phones off or to vibrate mode.

I would also like to remind the audience that in case of emergency, there are exit doors to the right and left as you exit this room. Additionally, the restrooms are down the hall to the right and left of the elevators.

During the period December 11, 2008, through February 24th, 2009, the Commission acted on seven items by notation vote.

Approved litigation on one case; Approved the final rule changing the address for EEOC Headquarters and the Washington Field Office;

Approved the final Privacy Act Regulations;

Approved conforming enforcement guidance to Desert Palace v. Costa;

Approved the revised Sunshine Act regulation;

Approved the proposed Spring 2008 Regulatory Agency; and,

Approved the Notice of Proposed Rulemaking to Implement Title II of the Genetic Information Non-Discrimination Act of 2008.

Mr. Chairman, it is appropriate at this time to have a motion to close a portion of the next Commission meeting in case there are any closed meeting agenda items.

ACTING CHAIRMAN ISHIMARU: Thank you, Ms. Wilson, do I hear a motion?

ACTING VICE CHAIR GRIFFIN: So moved.

COMMISSIONER BARKER: Second.

ACTING CHAIRMAN ISHIMARU: Is there any discussion?

If not, all those in favor, please say aye.

ALL: Aye.

ACTING CHAIRMAN ISHIMARU: Opposed?

The ayes have it. The motion is carried.

Thank you, again, Ms. Wilson.

Good morning and welcome to our first meeting at the EEOC's new home here at 131 M Street, N.E. It's been a move that we've all had to make from our old Headquarters at 18th and L, but most of us have now settled in. And this is our first meeting in this room. So part of this is a shake-out tour to see if all the microphones work and if the TV monitors work and if the sight lines are okay, but hopefully things will work out well today.

I want to thank former Chair Earp for all the work she and her staff did in bringing EEOC to its new Headquarters here in NOMA.

Today's meeting covers a new topic for us and I want to thank Vice Chair Griffin and her staff for their assistance in organizing this meeting and Commissioner Barker and her staff for their help in getting our panel of experts.

And let me thank the staff of the Executive Secretariat for putting this work together.

I'd also like to take this opportunity to recognize former Commissioner Paul Miller whose ground-breaking work in this field has helped to set the stage for the legislation we're looking at today.

Paul's seminal article, "Is There a Pink Slip in Your Genes?" continues to serve as essential reading for anyone interested in workplace rights, disability, genetics and the law. We thank him for the work he has done to bring us to where we are today.

Finally, I would also like to thank all of you who have made the effort to be with us today for the meeting, and in particular, our esteemed panelists who will be giving us their comments shortly. We appreciate your willingness to share your expertise with us today and we look forward to your comments on the NPRM between now and the end of the comment period.

The addition of Genetic Information Discrimination to the EEOC's mandate is historic and represents the first legislative expansion of the EEOC's jurisdiction since the Americans with Disabilities Act was enacted in 1990, almost 20 years ago.

The Genetic Information Non-Discrimination Act was passed with overwhelming bipartisan support by a vote of 95 to nothing in the Senate and 414 to 1 in the House.

We welcome the opportunity to implement important provisions of this landmark Act and to expand the promise of equal opportunity in the workplace for all Americans.

The Notice of Proposed Rulemaking before us today is already a well-traveled document. Significant efforts were expended by our attorneys in the Office of Legal Counsel last summer and fall drafting this document which the Commission approved in the fall of 2008 under the leadership of then Chair Earp.

After we approved the document we sent it to OMB for interagency review. The document came back from OMB earlier this year with relatively minor changes and last week the Commission voted unanimously to approve this NPRM.

Our goal for today's meeting is to call attention to this NPRM and to invite and encourage vigorous review and comment on this document. We look forward to obtaining feedback on this document from stakeholders throughout the public comment process so that we may issue our final rule which by statute we are asked to do no later than May 21st, 2009. We do so with the benefit of rigorous review and comment from the public.

At this time I'd like to turn over the floor to Mr. Christopher Kuczynski, Assistant Legal Counsel, who will give us an overview of the proposed rule before us today.

MR. KUCZYNSKI: Good morning. It's a pleasure for me to present to you this proposed regulation to implement Title II of the Genetic Information Non-Discrimination Act of 2008 or GINA.

The Genetic Information Non-Discrimination Act. The Commission has recently noted and approved this NPRM. I will summarize the 12 sections of the proposed Rule which will ultimately be published as a Final Rule at 29 CFR, Part 1635. And I'll summarize those in very general terms noting a few issues on which we are particularly interested in public comment. Obviously we ask for public comment on the entire NPRM but there are about five issues that I'll highlight in particular.

GINA was enacted in response to developments in the field of genetics, the decoding of the human genome and advances in genomic medicine. Congress believed that individuals were not taking advantage of genetic tests that could inform them whether they are at risk of acquiring certain conditions because of concerns about discrimination by insurers or employers with access to their genetic information. Moreover, without this legislation, Congress believed individuals might be reluctant to participate in beneficial genetic research. Consequently, Title I of GINA amends portions of the Employee Retirement Income Security Act or ERISA, the Public Health Service Act and the Internal Revenue Code to prohibit certain insurance practices based on genetic information. And, Title II of GINA prohibits employers, employment agencies, labor organizations, joint labor management committees and apprenticeship programs, all of which we refer to in the NPRM - we refer to them as covered entities - from using genetic information to make employment decisions, prohibit -- it prohibits deliberate acquisition of genetic information from employees and applicants for employment and, strictly limits the circumstances under which covered entities may disclose genetic information about applicants and employees.

Section 1635.1 of the Proposed Rule does nothing more than to state the Proposed Rule's purpose, that is, to implement Title I - or Title II of GINA. Proposed Section 1635.2 is a list of definitions common to employment discrimination laws such as Title VII of the Civil Rights Act of 1964 and the Americans with Disabilities Act. As this section makes clear, GINA applies to private employers with 15 or more employees, state and local government employers of the same size, Federal Executive Branch agencies, including the Executive Office of the President and the United States Congress.

Proposed Section 1635.3 includes definitions of terms unique to GINA: family member, family medical history, genetic information, genetic tests, genetic monitoring, genetic services and manifested or manifestation as that term applies to a disease or disorder in an individual or a family member of an individual. EEOC staff developed these definitions through close collaboration, both informally before the Commission approved the September 26th version of the NPRM and subsequently and formally during the coordination process through the Office of Management and Budget with agencies having the necessary expertise such as the National Institutes of Health of the Department of Health and Human Services.

Now the preamble accompanying the Proposed Rule specifically invites public comment on these definitions. For example, consistent with the plain language of the statute, the proposed regulation defines “genetic test” as "an analysis of human DNA, RNA, chromosomes, proteins or metabolites that detects genotypes, mutations or chromosomal changes. The regulation adds, however, that a test to detect the presence of a virus that is not composed of human DNA, RNA, chromosomes, proteins or metabolites is not a genetic test, nor is it a test to determine whether someone is using drugs or alcohol. These points, these additional points, with respect to the definition of genetic test, were included to provide some additional clarity and some assurance to the regulated community that certain types of tests they may legitimately conduct are still permitted subject, of course, to whatever limitations the ADA or other laws may impose. The preamble asks for comment on whether additional examples of what do or do not constitute genetic test, should be included in the final regulation or preamble. Sections 1635.4 through 1635.7 prohibit the same forms of discrimination as Title VII and other employment discrimination laws.

Section 1635.4 prohibits discrimination with respect to hiring, promotion and demotion, seniority, discipline, termination, compensation and other terms, conditions and privileges of employment.

Section 1635.5 prohibits policies and practices that limit, segregate or classify employees because of genetic information.

Section 1635.6 prohibits an employment agency, labor organization or joint labor management committee from causing an employer to discriminate against an individual because of genetic information such as, where an employment agency refuses to refer an applicant for employment because of genetic information.

Section 1635.7 prohibits retaliation against an individual who opposes any act made unlawful by GINA, files a charge of discrimination or assists another in doing so or who gives testimony in connection with a charge. Unlike Title VII, GINA does not provide a cause of action for disparate impact. Instead, it requires that a special commission study the issue beginning in 2014 and make recommendations on whether the law ought to be changed to provide for such a cause of action.

1635.8 -- proposed section 1635.8 includes the general rule that a covered entity may not request, require or purchase genetic information about an applicant or employee and then describes six narrow exceptions to this rule.

The first exception is where the acquisition of genetic information is inadvertent, which may include information that a supervisor or manager overhears in a conversation between co-workers. Sometimes this is referred to and it was referred to during the legislative history as the water-cooler exception, as well as inadvertent disclosures that occur in other circumstances such as when an employee inadvertently provides genetic information as part of documentation to support a request for reasonable accommodation under the ADA. Genetic information may also be provided as part of a voluntary wellness program under certain very narrowly defined circumstances, in support of a request for FMLA leave, up through documents that are publicly and commercially available (such as newspapers, magazines or books), as part of genetic monitoring of toxic substances in the workplace so long as an employee is provided with prior knowing written and voluntary consent - or provides prior knowing written and voluntary consent; and, where an employer engages in DNA collection for law enforcement purposes as a forensic lab or for human remains identification.

Three instances in which we specifically ask for public comments in connection with proposed section 1635.8 are noteworthy.

First, we ask for input on how the term "voluntary" should be defined with respect to a wellness program. In ADA enforcement guidance from 2000, the Commission has said only that a wellness program is voluntary if it neither requires employees to participate, nor penalizes employees for nonparticipation.

Second, we invite comment on whether the exception for genetic information acquired through sources that are publicly and commercially available should include sources other than those mentioned in the statute, that is, other than newspapers, magazines or books. The proposed regulation also includes electronic media such as the Internet, television and movies. We ask whether these sources should remain a part of the regulation, and whether others (such as personal websites and social networking sites) ought to be included.

Finally, we ask for comments on how the exception applicable to DNA collection for forensic labs and human remains identification will affect law enforcement.

Section 1635.9 includes GINA's confidentiality requirements and six narrow exceptions to confidentiality. Consistent with GINA's plain language, a covered entity must keep genetic information separate from personnel files, but it may keep it in the same file as medical information subject to the ADA. Also, the NPRM states that covered entities are not required to keep genetic information confidential that they obtained through sources that are publicly and commercially available, but, still may not use the information to discriminate.

The NPRM allows disclosure of genetic information in six situations, all found in the statute; that is: to the individual to whom the information relates, if the individual requests disclosure in writing; to an occupational health researcher “if the research is being conducted in compliance with certain federal regulations;” to comply with a court order, as long as the disclosure is carefully tailored to the terms of the order and the covered entity informs the individual about the order and what information shall be disclosed; to government officials investigating compliance with GINA when the information is relevant; and to comply with the requirements of the FMLA or a similar statute or similar state or local leave laws; and to federal, state or local public health officials in connection with family members who have a contagious disease that presents an imminent hazard of death or life-threatening illness as long as the employee is informed of the disclosure.

Section 1635.10 sets forth the remedies, rights and procedures available for violations of Title II of GINA. Essentially, they are the same remedies, rights and procedures that are available for violations of Title VII, including the requirement to file charges with EEOC against private or state or local government employers and the requirement to exhaust administrative remedies and meet all applicable time frames for filing complaints against federal sector employers. Statutory caps on damages apply and punitive damages are unavailable against federal, state or local government employers. Proposed section 1635.11 describes the relationship of GINA to other federal, state or local laws. GINA does not limit the protections available under any federal, state or local laws (including privacy laws) that provide equal or greater protection than GINA provides, does not limit an individual's rights under any federal, state or local laws that prohibit discrimination on the basis of disability, most notably the ADA; and does not affect rights under state workers’ compensation laws. This section also includes GINA's "firewall” provision that seeks to ensure a health plan or -- health plan or issuer requirements or prohibitions are addressed and remedied through ERISA, the Public Health Service Act or the Internal Revenue Code(as those laws are amended by Title I of GINA) and not through Title II or other employment discrimination procedures. To try and put it simply, if Title I provides a remedy for a particular insurance-related practice, then the practice may not be challenged and a remedy may not be sought under Title II.

Other provisions in this section, in addition to what I've already mentioned, include that GINA does not limit or expand the rights of federal agencies to conduct or support occupational or other health research conducted in accordance with certain federal regulations and does not limit the statutory or regulatory authority of the Occupational Safety and Health Administration or the Mine Safety and Health Administration to promulgate workplace health and safety laws and regulations.

Another provision addresses the exemption from GINA of the Armed Forces Repository for Specimen Samples for the Identification of Human Remains.

Finally, proposed section 1635.11 states that the provisions of the HIPAA Privacy Rule, not those of GINA, govern the obligations of HIPAA covered entities with respect to genetic information that is protected health information. For example, if an employee received treatment at the hospital where she was an employee, HIPAA would govern the collection and maintenance of medical records obtained by the hospital in its role as a healthcare provider. However, Title II of GINA would govern genetic information about the same employee obtained by the hospital in the course of employment, such as family medical history provided to support a request for FMLA leave. Lastly, proposed section 1635.12 says that GINA does not apply to the acquisition, use, or disclosure of information about a manifested disease or disorder, other than genetic information about that disease or disorder, even if the disease or disorder has a genetic basis. However, provisions of the ADA governing the acquisition, use, and disclosure of medical information continue to apply to information about a manifested disease or disorder.

The NPRM has been sent to the Federal Register and we expect it to be published for a 60-day notice and comment period by the end of this week.

With that, that concludes my statement and I'd be happy to take any questions.

ACTING CHAIRMAN ISHIMARU: Mr. Kuczynski, thank you very much.

We'll start with questions, statements, comments starting with the Acting Vice Chair.

ACTING VICE CHAIR GRIFFIN: Hi, everyone. I want to thank all the panelists that have taken the time to be here today. I think as a former colleague, Paul Miller, once said in testifying about this particular issue, with great knowledge comes great responsibility, and that couldn't be more true. And our responsibility is to make sure that we have regulations that protect the public and give employers some clear guidance on how this law will operate to protect people in the workplace. So, I'm looking forward to hearing everyone else's testimony and more importantly I'm looking forward to a thorough review of our regulations and pleadings and listening to the comments that come back to us and help us refine these regulations to make them really face the responsibility that we have in protecting everybody.

That being said, one of the things that I realized as I was listening to Chris is that I don't know anything, this Commission that's going to be established is I think going to be very important and it's one of the areas that I don't know a lot about.

I was wondering if you could tell us anything about this Commission and how it will be established and will we be represented on that Commission? Anything that you can tell us.

MR. KUCZYNSKI: Well, the Commission is made up of -- I don't recall exactly how many members. There are a number of members of the Commission, many of them selected by members of various committees or heads of various committees in the legislature, in the House and in the Senate. So, it's a rather large Commission and the purpose of it obviously is to -- and it's going to be housed here. So, one of the things I know is we're going to have to find space for it to operate. But it's going to -- you know, it's mandated simply to as of 2014 to start looking at the issue of whether disparate impact theory makes sense under GINA.

It's not clear right now whether-- you know, what disparate impact claim under GINA would look like and that's what this Commission is going to look at after six years of having an opportunity to enforce the law, EEOC having an opportunity to enforce the law. Do we see issues like this coming up in charges that we're receiving or do we know about instances in which there may be possible disparate impact.

So, after six years we probably will have a pretty good indication of what kind of track record there is and the Commission will look at that issue six years out and try to determine whether it makes sense to amend the law to provide for that. And I do believe that we are represented on that Commission.

ACTING VICE CHAIR GRIFFIN: So we will house the Commission as well as be a member of the group?

MR. KUCZYNSKI: Yes. Right. Correct.

ACTING VICE CHAIR GRIFFIN: Great, thank you.

I have nothing more Chairman Ishimaru.

ACTING CHAIRMAN ISHIMARU: Great. Thank you, Madam Vice Chair.

Commissioner Barker?

COMMISSIONER BARKER: Thank you.

I want to start by thanking the Acting Chairman for calling this meeting. I think it's very important that we have the opportunity to get input from experts who have been kind enough to come forward today to get as much input as we can on the issues that GINA presents.

I also want to thank Chris Kuczynski and members of OLC, Peggy Mastroianni and others who have worked very hard for a long time in developing these regulations.

You know, the regulations come forward to us and we have no idea the amount of work that's gone behind them. And we have high caliber lawyers who have worked on these issues for months and even years trying to decipher the whole impact of the acquisition of genetic information and the use of it by employers.

And this is not easy stuff to interpret. This involves learning a whole language to those of us who are in the employment world don't know. I mean, what do we know about genetics? What do we know about genomes? So, my hat's off to Chris and others in also Legal Counsel, who spent such a long time developing this scientific expertise that you have to know to go behind the regs.

Other than that, Chris, I don't have any questions for you. I thought your presentation was excellent and thank you again for your work.

ACTING CHAIRMAN ISHIMARU: Thank you Commissioner Barker.

Mr. Kuczynski, one clarifying question.

Once the NPRM is published in the Federal Register, the public has 60 days from that date to make comments to us?

MR. KUCZYNSKI: Correct.

ACTING CHAIRMAN ISHIMARU: Right, not from the date that we actually voted on it, once it's published --

MR. KUCZYNSKI: Correct. Sixty days from the day that it's published in the Federal Register, -- and that may be tomorrow, it may be Friday.

ACTING CHAIRMAN ISHIMARU: Friday. Okay. Hopefully, soon. Great.

Thank you very much. A very helpful presentation.

We're pleased to welcome our panel of experts today. Let me introduce them in order of appearance and I want to thank them all for agreeing to come help us today on relatively short notice to give us guidance on things we should be thinking about as we open up the comment period.

So, if you could come forward please, the panelists.

Our first speaker today is Susannah Baruch, who is the Law and Policy Director of the Johns Hopkins Center for Genetics and Public Policy, which focuses on genetic discrimination laws and policy including GINA and the use of genetic testing in the United States military.

Previously, Ms. Baruch served as the Director of Health Law Policy at the National Partnership for Women and Families where she testified before the U.S. Senate on genetic discrimination legislation and founded the Coalition for Genetic Fairness which has worked for a decade to promote legislation to prevent genetic discrimination.

Following her will be Jeremy Gruber who is the President and Executive Director of the Council for Responsible Genetics. Previously he served as the Legal Director of the National Work Rights Institute. He's a founder and Executive Committee Member of the Coalition for Genetic Fairness and worked closely with Congress members and staff on the enactment of GINA.

Following Mr. Gruber will be Rae Vann, the General Counsel of the Equal Employment Advisory Council. Ms. Vann supervises the preparation and filing of the EEAC's amicus curiae briefs in important EEO cases.

Prior to rejoining the EEAC, Ms. Vann was associated with Shipman & Goodwin, a major Connecticut law firm where she practiced labor and employment and school law.

Following Ms. Vann is Karen Elliott of Gregory Kaplan, a firm in Richmond, Virginia, and is a member of the Society of Human Resource Management. Ms. Elliott's practice spans counseling and trial work in the labor and employment area for companies of all sizes from start-ups to Fortune 500 companies. She's here representing the Society for Human Resource Management today.

And the last member of our panel is Andrew Imparato, the President and Executive Director of the American Association of People with Disabilities. Prior to joining AAPD, Mr. Imparato was General Counsel and Director of Policy for the National Council on Disability. He's an alumni of the EEOC, having served as an attorney advisor for our former colleague, Paul Miller, and counsel also to the Senate Subcommittee on Disability Policy, and a staff attorney and a Skadden fellow with the Disability Law Center in Boston.

So, we're delighted you all could join us today. Again, I thank you all for agreeing to come on short notice and to give us your expertise.

We'll start with Ms. Baruch.

MS. BARUCH: Thank you very much.

Good morning and thank you for the opportunity to testify today.

I am the Director of Law and Policy at the Genetics and Public Policy Center, which is supported by the Pew Charitable Trusts at Johns Hopkins. And our mission is to help policymakers and the public better understand and respond to the challenges and opportunities that arise from the rapid advances in human genetics and its application to health care.

Scientists and genetic researchers increasingly have the ability to uncover genetic factors that contribute to health and disease. But for too long, patients’ fear of genetic discrimination has interfered with our ability to maximize the benefits of genetic medicine. We know that in the past patients have passed up genetic testing that could benefit their health or benefit researchers' work and patients have gone to great lengths to keep genetic information secret, even from their own doctors. With the passage of GINA and its implementation, we welcome a new era. There are many factors that an individual must consider in deciding whether to take a genetic test, but we believe the fear of discrimination must not be one of them.

EEOC has played a critical leadership role already in establishing that genetic information could not be used to discriminate in the workplace. Your interpretation of the ADA as it relates to genetic information and your involvement in cases such as Burlington Northern have provided a robust analysis of many of the issues that underlie GINA. We thank you for that work.

We have followed closely the progress on GINA regulations related to both Title I and Title II and we eagerly await the opportunity to see the NPRM that you are releasing.

I have four specific points to make today.

The first point as we look at the NPRM, an issue that we will be looking at is that GINA need not and should not create a burden for employers. Employers who are already following good employment and HR practices and complying with existing laws, including Title VII, the ADA and the FMLA should find that GINA's prohibitions and procedures are consistent with those laws in terms of procedures and enforcement. And we expect that the regulations will provide assurance that this is indeed the case.

My second point is that definitions do matter. For concepts like genetic test, genetic information and manifest disease, we hope that the EEOC will provide clear examples as Mr. Kuczynski already indicated they were considering, and remain flexible as science changes.

We have already provided extensive analysis to some policymakers on this issue and we will be continuing to look carefully at what emerges during this process.

My third point is that GINA prohibits employers from requesting, requiring or purchasing genetic information and this protection is critical, it really underlies the bill. We will be looking closely at the way the exceptions to this rule are handled. In particular, we recognize the need for employers to have clarity on what constitutes inadvertent acquisition of information.

And as a second point, we believe the NPRM should handle the difficult issue of wellness programs carefully.

We hope that EEOC will provide guidance on some issues like wellness programs that overlap Title I and Title II.

Wellness programs that impose substantial financial penalties and higher deductibles on participants are of particular concern. And we would welcome EEOC's discussion whether wellness programs that are currently authorized under HIPAA would, in fact, quality as voluntary wellness programs under federal employment law.

My final point is that in considering the section of GINA that is sometimes referred to as the firewall between Title I and Title II, the reality of the workplace needs to be considered. A majority of Americans receive their health care benefits through their employer. So, although federal law makes a distinction between the employer and the employer-sponsored health plan, often in smaller offices, in particular, it is the same person controlling hiring and firing, processing ADA or FMLA claims and controlling the administration of health care benefits.

Genetic information, medical information and health benefit information must be handled carefully and appropriately. We believe that fortunately because GINA's rules are internally consistent between the two titles, the protections should be consistent and enforcement should be seamless for the individual.

Thus, although the technicalities of what is the employer versus what is the employer-sponsored health plan may be of legal interest, the important fact for many individuals is that neither may request or acquire genetic information nor use it to discriminate. And both must have rules and procedures in place that ensure compliance.

Thank you very much for the opportunity to speak today. I look forward to our continued discussions.

ACTING CHAIRMAN ISHIMARU: Great. Thank you very much.

Let me note for the record that your written statements will be made part of the record and you need not read it back into the record, but we look forward to your comments.

Mr. Gruber?

MR. GRUBER: Good morning.

Thank you for inviting me to speak with you today.

My name is Jeremy Gruber. I'm the President and Executive Director of the Council for Responsible Genetics. And until quite recently the Legal Director of the National Work Rights Institute, a member of the PEW working group on GINA and a founder and executive committee member of the Coalition for Genetic Fairness.

When we founded the Coalition for Genetic Fairness almost a dozen years ago, it was with the hope that we could organize the many organizations that were disparately working on genetic discrimination legislation together into one cohesive force to coordinate our efforts and advance the legislation through the Congress. Little did we imagine the roller coaster journey we’ve been on for the last dozen years, but little did we also imagine the strong new law that would emerge as a result of the combined efforts of so many people both in government and in the private sector.

I'm particularly excited to be here today for as many of you may remember particularly early on there was a question as to whether employment would even be covered by a genetic discrimination law. And as an employee rights advocate it's been particularly exciting to have watched the Congress pass and the President sign a very strong employment provision section of GINA with very strong protections for employees.

In fact, with GINA this is really the first time when we've looked at really all the discrimination laws that have come through Congress over the years, where Congress has passed a discrimination law where the covered protection had not yet become deeply ingrained in the social fabric. This is a really original concept for the Congress to have engaged in. And so I'm particularly proud and I think we should all be particularly proud that the Congress had the foresight to pass legislation to prohibit a form of discrimination before it became endemic.

Title II of GINA is a relatively common-sense law. My hope and expectation is that the regulations under Title II of GINA reflect the intent of Congress that employees enjoy strong protections under the law, not just to protect them from discrimination, but from access to and disclosure of their personal genetic information as well. Under the best of circumstances, as I'm sure you are quite aware, discrimination cases are difficult to prove. Employers are often the only party with access to information supporting the discrimination claim; indeed, employees are often unaware, let along able to prove that discrimination has occurred. Preventing access to information that can lead to discrimination is often the best way to ensure that discrimination does not occur in the first place.

It is with these thoughts in mind that I hope the regulations address the following.

In terms of the acquisition of genetic information in the general sense:

GINA prohibits employers from requesting genetic information even in the rare case where it is arguably job-related. Though over the course of many years it was very difficult for even the best minds to come up with ways or examples of where it might be job-related. Nevertheless, in terms of the Americans with Disabilities Act, for example, this poses a change to the authorized collection of medical information relevant to meeting a reasonable accommodation request. Employers will need to modify their requests for medical information under these circumstances to remain in compliance with GINA. Similarly, under the ADA, there is virtually no limit to the scope of post-conditional operative employment medical evaluations. Given that most individuals’ medical files include such things as family history and may even have genetic test information, an employer that requires access to a large amount of information may run afoul with GINA. Employers will have to modify their medical release forms to minimize this risk. Our hope is that the regulations will provide some guidance in this area for both employers and employees.

In terms of the exceptions to the rule prohibiting acquisition of genetic information, it is our belief that such exceptions should be interpreted in the strictest sense possible, both to ensure employee privacy and Congressional intent.

In particular with regards to the inadvertent acquisition or so-called water cooler exception; it is clear that this exception protects the employer when an employee spontaneously volunteers their family history. What isn't clear, however, is how this exception applies when an employer begins asking probing questions that may or may not be so innocent. Nor does it specifically address situations where an employer acquires information more broadly where they should know that family history would likely be included. We hope that some guidance can be provided for both employers and employees in these situations.

In terms of the exception allowing for acquisition of genetic information where health or genetic services are offered by the employer:

Under GINA employers can ask for genetic information as part of a wellness program as long as it is voluntary along with other requirements. It is unclear, however, at what point the voluntary requirement is actually met. Can an employer condition participation in a voluntary wellness program on completing an often standard health questionnaire, including questions regarding family history? Or, must the employer allow participation in the voluntary wellness program for an employee who refuses to complete elements of the questionnaire dealing with potential genetic information?

Additionally, as Susannah mentioned, there's been much discussion regarding the HIPAA nondiscrimination rules which currently permit a great deal of discrimination based on health status. It is our hope that the EEOC will consider whether such wellness programs currently authorized under HIPAA, quality as voluntary wellness programs under federal employment law and how this rule intersects with this exception. Furthermore, it is our hope that the regulations provide guidance as to when such programs are governed by Title I as opposed to Title II.

In terms of the exception for acquisition of genetic information relating to monitoring for toxic exposure: Some employers have programs which conduct genetic test of workers in specific hazardous environments to determine if they need to be reassigned before symptoms of adverse effects even appear.

Such genetic monitoring programs are allowed under GINA. However, GINA makes an important change in the law in this sector. Currently, employers can require employees to be tested. Under GINA, participation is voluntary along with other requirements. If an employee wants to keep working in a potentially hazardous area, perhaps because of a pay differential, can the employer transfer the employee to another part of the facility and, if so, under what conditions?

In terms of disclosure: GINA permits disclosure of genetic information in response to a court order along with other requirements. A general reading of this language would prohibit disclosure for related procedures such as subpoenas and discovery requests. Will the regulations make this distinction clear?

And finally in terms of construction, what if any steps will the regulations take to further refine the firewall between Titles I and II of GINA? In particular, how directed action by an employer, in relation to the issuance of their health insurance program, will be attended to by GINA?

Thank you again and I welcome any questions you may have.

ACTING CHAIRMAN ISHIMARU: Mr. Gruber, thank you very much.

We'll next hear from Ms. Vann.

MS. VANN: Acting Commissioner Ishimaru, Acting Vice Chair Griffin, Commissioner Barker, Commissioner Earp, thank you for giving me an opportunity to speak with you on behalf of the EEAC this morning on this very important topic.

Just as a preliminary observation, I'd like to just make clear that the EEAC welcomes the opportunity to provide comments-- written comments on the Notice of Proposed Rulemaking and certainly once we've had an opportunity to review what has been proposed by the Commission, our thoughts or suggestions will be much more complete than the general recommendations that I will be offering to you this morning.

I'd also like to point out as Mr. Gruber did that -- and as you, Chair Ishimaru, pointed out in your opening remarks, this law passed with strong overwhelming bipartisan support and I think it's agreed to by everyone in the room that no one endorses workplace discrimination on the basis of genetics.

So, we applaud the Commission's efforts to provide implementing guidance to employers on the specific aspects that we will be looking for guidance on.

With respect to specific recommendations I do have several recommendations that I'd like the Commission to bear in mind as it continues to finalize its rule.

With respect to the definitions portion of the proposed regulations as I believe Mr. Gruber pointed out, definitions matter. And specifically with respect to the definition of family members, we would just ask that the Commission look carefully at the language and provide some clarification with respect to those degrees of relationships that are outlined in GINA. The language is somewhat narrower than were earlier versions of the law which define family members as all persons related by blood to the employee, or to the employee's spouse or child. We would hope that the EEOC’s implementing regulations would provide guidance as to what these degrees of relationship mean.

As was pointed out earlier as well by Mr. Kuczynski, GINA clearly does not provide a cause of action for disparate impact discrimination. We'd encourage the EEOC to make that clear in its regulations. And, furthermore, point out that any claim that an employer violated the limits, segregate or classify provision would have to include evidence that the employer intentionally discriminated on the basis of genetic information.

GINA also makes it a separate unlawful practice as you know for an employer to request, require or purchase genetic information about an applicant or an employee. As we've discussed, there are six limited exceptions to that prohibition. I'd just like to touch upon several of those exceptions with respect to areas that clarification in our view would be helpful.

With respect to the inadvertent request exception, we believe that the regulation should clarify that this exception applies not only to the water cooler conversations that we've discussed today but also to any time that an employee volunteers genetic information without prompting by the employer. I appreciate the concerns that were raised by my colleague with respect to inappropriate probing by employers. And I agree that could be very problematic both for employees who do not wish to be discriminated against on the basis of genetic information and for employers who seek to avoid discriminatory practices under GINA. So, to the extent that the agency can provide clarification as to what that means, that would be very helpful to the employer community.

As to the employer health services exception, the regulations in our view should also make clear that it applies to any health services provided by the employer as was outlined in the legislative history including on-site wellness centers as well as on-site medical facilities.

The medical -- the FMLA medical certifications exception with respect to that exception, we would hope that the EEOC regulations would provide practical illustrations of how it would apply. I'm sorry, that the EEOC regulations would make clear that the employee or family member requesting genetic information as part of the medical certification process under the FMLA, that that information gathered as part of that process clearly would be exempted from GINA coverage.

And we would hope that you would point out in your regulations that requests for information connected with any request for leave under the FMLA or any ADA reasonable accommodation process would always be exempted. Naturally, the employer would always be obligated to use that information in a nondiscriminatory manner, but that should be presumed that as long as the information is being requested as part of a bona fide FMLA certification process, or ADA reasonable accommodation process, if that would fall within this exemption.

In explaining the publicly available information exemption, we would ask that the EEOC regulations provide some practical examples of how this exemption would apply. One example might describe a manager who buys and reads as was discussed earlier a magazine or a newspaper that includes a story on genetic markers in which an employee is quoted as having that particular genetic marker.

And then finally with regard to GINA's confidentially provisions, we strongly encourage the EEOC to address the overlap and interplay between GINA and the ADA, FMLA and HIPAA. The regulations should make clear that an employer will be considered in compliance with GINA if it treats genetic records as confidential medical records in compliance with the ADA. And also that an employer would not violate GINA if it co-mingled those confidential records with confidential ADA medical records that naturally, of course, would be subject to the ADA confidentiality provisions.

Thank you for giving us an opportunity to weigh in and we look forward to providing more detailed and substantive comments at a later time.

ACTING CHAIRMAN ISHIMARU: Great. Ms. Vann, thank you.

Let me note for the record that the actual text of the NPRM was made available to the public today at the start of this meeting. The panelists had not seen it before the meeting began. Their comments are not based on having reviewed the NPRM and of course we look forward to any comments you may have for the record during the comment period, so, I just wanted to make that clear in case it wasn't.

I also wanted to note that at the conclusion of the testimony today, the Commission will go into closed session to consider a litigation recommendation. So, I wanted to note that we'll be clearing the room after the testimony is done.

Ms. Elliott, we look forward to hearing from you.

MS. ELLIOTT: Yes. Thank you, Chair Ishimaru and Vice Chair Griffin, Commissioner and Counsel.

We appreciate this opportunity to be here today. I'm speaking on my behalf in several -- or I'm speaking in several roles, first as a private practitioner who counsels literally hundreds of employers across the United States as a member of SHRM. But I am also an owner and so I am therefore an employer and I actually have to implement my own advice as well as these regulations. So, it is an interesting position to be in at times.

I come today before you on behalf of SHRM, the world' largest association devoted to human resource management. SHRM's long-held policy and those of its members is that employment decisions should be based on an individual's qualifications and ability to perform a job, not the characteristics that have no bearing on the job and especially situations such as genetics. That's good business. That's good for everyone.

SHRM is one of the founding members of the Genetic Information Nondiscrimination Employment Coalition and has supported the passage of this legislation.

I think the greatest challenge of this Act is that it focuses more on the flow of genetic information, literally that water cooler information that we are talking about and not necessarily the discriminatory conduct. SHRM is concerned as I am as a practitioner that employers can find themselves involuntarily in possession of genetic information through the normal course of the workplace operations. So, we are very hopeful that through this hearing, the rule-making process, that innocent and I focus on that work "innocent" and inadvertent acquisitions of genetic information can be addressed by the Commission.

While GINA prohibits as an unlawful employment practice an employer from requesting or requiring or purchasing genetic information, it does -- we recognize -- provide limited exceptions to the acquisition of that information.

The inadvertent blanket exception requester requires family medical history is an exception. Clearly circumstances of inadvertent requests are not self-explanatory and we have heard members address that today and it appears that it will be addressed in the regulation that we've not seen. But those illustrative examples are really, really helpful to the employer and the practitioner in advising.

There is an element of certainty that applies and gives a clear road map. I can't overemphasize the need for these illustrative examples. They would help avoid many conflicts.

GINA's list of enumerated exceptions is far from a complete picture, as I think as has been recognized, in which an employer may or willingly or unwillingly receive genetic information.

I think we've discussed today, we've heard many examples especially among smaller employers who receive information from employees through basic human interactions; the casual inquiry about somebody returning from sick leave, dealing with a sick parent, might find out literally that that parent has a genetic disease.

Employees who suffer emergencies in the workplace such as a heart attack, and you're asking the employee, you know, are you on medication? Do you have a, you know, family history of these in order to try to get help to that individual. Those are all inadvertent human interactions that we would not want, for other reasons if that employee were terminated from employment, that the employer find themselves before the Commission for an unlawful action.

There's other examples of information flow in the office setting. If an employee seeks help from HR to get reimbursement for health care provider situations, medical or genetic tests. The employer's attempt to assist the employee with a billing dispute might mean that the employer now has knowledge. These are very real examples. I deal with those in my day-to-day practice with the employees who are concerned about the revealing of that information and employers who want to help but don't want that information. And it impedes the assistance that the employer can give because the lawyers are over there saying, you don't want that information because of where that could lead.

So we want to help clarify GINA's applicability in those specific situations and the rule-making we hope will help fulfill those gaps with examples to help the employer assist the employee.

The exceptions similarly fail to address situations related to FMLA. I think we've heard a lot about that. Today a lot of local statutes, state statutes and I believe there may be some new ones coming down through Congress, the rule-making.

There are other situations; we've talked about ADA, HIPAA and COBRA and the importance, I think, everybody in this panel I'm hearing today understands, recognizes that the critical need for correlation and coordination between all of those statues so that the employer is not having to memorize a litany of rules but can get a concept that they can invoke in the workplace to maintain the protection of the employees.

GINA does allow disclosure of genetic information in disparate and narrowly construed situations. It does not address the disclosure of genetic information in health-related emergencies as I mentioned. And something else, it recognizes FMLA but there's thousands of employers who are under FMLA who request doctor's notes, physician notes and I can tell you that physicians often put down absence due to diabetes, due to depression. The employer does not ask for this information but it is voluntarily put on those medical forms or the doctor's notes and the employer needs assistance in learning – and knowing how to address GINA with that type of situation.

So, in summary, the Commission in its rule-making, we request, should clarify the statutory sections. If information is not sought by the employer, the information that is self-disclosed by the employee should be covered under that first exception. The exception allowing for acquisition and disclosure of information with FMLA. We hope that it will be clarified and also through ADA with clear guidance to employers about rights and responsibilities for both the employer as well as the employee.

SHRM is looking forward to working with the Commission on the successful implementation of this. It provides a huge educational opportunity for all of its members and we look forward to assisting with that process.

ACTING CHAIRMAN ISHIMARU: Ms. Elliott, thank you very much.

Mr. Imparato?

MR. IMPARATO: Thank you, Acting Chair Ishimaru and Acting Vice Chair Griffin and Commissioner Barker for inviting me. It's always good to come back to the Commission. And I'm delighted to be here in the wake of two very large victories in the last Congress of both the Genetic Information Nondiscrimination Act and the ADA Amendments Act, both of which were multi-year efforts.

And just on the GINA front, I remember when I was working for Senator Harkin, we were looking at how ADA could be used to protect against genetic discrimination. Back in '93 I remember coming to the Commission, working with Paul Miller on the guidance, on the definition of disability and looking at how ADA would play out. So this is an issue that I think the Commission has been grappling with for a long time and consulting and working with stakeholders in government and outside government for a long time.

I appreciate Commissioner Barker's comments but I actually think you all do all have a lot of expertise in terms of understanding how discrimination on the basis of genetic information can play out in the workplace. And certainly your experience with the ADA can help a lot in terms of -- it's the same kinds of attitudes, the same kinds of fears, myths and stereotypes that lead to disability discrimination that can lead to discrimination on the basis of genetic information.

I don't want to repeat other people's points. I just wanted to emphasize three things in my oral comments. I look forward to an opportunity to actually review the proposed rule.

First, I just want to touch on the link between the GINA legislation and the ADA Amendments Act. When I had an opportunity to testify in front of the Senate Health Committee in 2002 when they were looking at legislation, I talked about my own children. You know, I have bipolar disorder, manic depression. It's a condition that I'm told has a strong genetic link. And, you know, there's a chance that one or both of my sons have a genetic predisposition to develop the condition.

In 2002 we had a situation where the way the courts had interpreted the ADA and the way that the genetic bill was framed which is the way it passed. They had protections as long as their condition did not manifest. Right? So, the first time they had an episode of depression, they would lose the protections under GINA and there was a big hole at that point. And if they were able to get their condition, you know, well managed, they may not actually come into the protections of the ADA.

We now have with the ADA Amendments Act, especially the “regarded as” prong in that statute, a very strong effort to close that gap and I think the Commission has an opportunity, particularly when you're talking about this in your kind of bully pulpit role. You all do a lot of public speaking, to make it clear that, yes, GINA only protects people whose conditions haven't manifested but we now have a much more robust protection under the ADA which should pick up people whose conditions have manifested. And I think that's an important message.

Another more subtle point. One of the talking points that was used a lot to sell the GINA legislation in the Congressional process was that it's wrong for people whose conditions haven't even manifested to experience discrimination in the workplace. The problem with that talking point is it implies that it's okay for people whose conditions have manifested to experience discrimination. So, I encourage you all again to look at these statutes together and make sure the message emphasizes the basic point which Karen and others have made that people should be evaluated based on their performance, based on their qualifications and not based on things that are irrelevant to whether they can do the job.

Second point I wanted to make goes to the need for training. When I worked at the National Council on Disability, we did a study of federal enforcement of various civil rights laws that protected people with disabilities. One of the big messages of those studies for me was that the people who actually implement and enforce civil rights laws generally are the people in the protected class. It's parents of children with disabilities who make sure that their rights are respected in the education system. It's adults with disabilities who assert their rights under fair housing, under employment and other civil rights protections, but it's hard to do that if you don't know your rights. And I think particularly with the genetic bill, the ADA Amendments Act, you may want to partner with the Department of Labor and incorporate a mental health parity component. That's another important new law that creates new rights that affect employees. But to me this is a great time to be going back out there doing training for people in the protected class and for employers. I don't mean to exclude employers, but really take seriously the opportunity to re-educate the protected class about what their rights are and how they can work with the EEOC to make sure that those rights are respected in the workplace. When ADA was passed in 1990, there was a major effort undertaken by the Commission and the Department of Justice to do that kind of training together. I think now would be a great time to go back out and do that kind of training again. And really have a way to have that be a regular thing. Because obviously one of the things that I really like that Commissioner Earp led for the Commission was training young women on their rights in the workplace in terms of sexual harassment and other nondiscrimination laws as they were starting out as employees. I think that's a great opportunity too for the Commission to educate folks as they are beginning their careers. What are the protections that are in place for them as adults?

And then the last point I wanted to make which really supports a lot of what Jeremy said is I encourage you as the Commission to look at the regs from the perspective of, we want to be able to tell anybody who’s trying to decide whether to have a test, that the information that they find out will not be used in a way that harms them in their current job or in future jobs. So when you're on the fence on some of those issues that Chris talked about where you’re looking for comments, that's the barometer I would use. How can we answer that question? Is this test going to hurt me in employment and where we can say with as much certainty as possible, “No,” you will not be penalized by your current employer or future employers because of your decision to get this test.

When you’re looking at exceptions, I would look at them in a way that protects the employee's rights as robustly as possible. And, again, you know, from my perspective, going back to what Susannah said, the science is changing so fast. I go back to '93 when we started working on this with Senator Harkin. So much has happened scientifically during that period. I think it's great that we got the legislation passed, but I think we don't even know how this information is going to become part of, you know, public records moving forward. And there's an industry that's developed around genetic testing that's growing quickly. I don't see a lot of regulation around that industry. So I just encourage you all to recognize, even though there may not be a lot of that discrimination happening now, we could have a lot more information out there in the public domain in the near future. And what can you do now to put down some markers for the employer community to help them understand how dangerous that information is and why it's generally not a good idea to try to get that information from a prospective employee or from a current employee.

So, again, I look forward to reading the proposed Rule and I appreciate the opportunity to provide a statement for this.

ACTING CHAIRMAN ISHIMARU: Thank you very much. Indeed, things have changed quite a bit since 1993 and the whole flow of information, the access to information and how people find it, acquire it, see it, has totally been turned on its head. And it's something we need to consider as well.

I'm going to turn to questions starting with the Acting Vice Chair.

ACTING VICE CHAIR GRIFFIN: Thank you. Thank you, everyone. This is really great and, you know, given what you’ve all said, I'm really looking forward to what you have to say after you see the regulation.

One of the things that you -- this is for all of you because it's something that you've all said in some way in your testimony and remarks.

It centers around the need for us to make sure that there are clear examples of things in our regulations. And I think we grapple with it sometimes when we're writing regs no matter what the regs are. You know, how much to put in the regs, whether it's guidance or an appendix and if you could speak to that because I've become of the mind that maybe examples right in the regs are useful. And I want to hear what you have to say about that.

Anyone?

MS. ELLIOTT: Well, I'm happy to step up to the plate here because they are --

MR. IMPARATO: Just say who you are.

MS. ELLIOTT: Yes. I'm Karen Elliott. Thank you.

And as a practitioner, the regs live on my desk, they're annotated, they're underlined and they are the go-to source. As you are familiar, the law is an outline and the regs fill in the details of that outline and are very critical for guidance. As counsel, there's a lot of, you know, a lot of what we do is -- what employers want to know is what should they do? They want to stay out of court. They want to do the right thing by their employee, but they also want to be able to run their business effectively and efficiently.

They don't need a lawyer saying, well, maybe, maybe this, maybe that. They want an answer. They want a yes, they want a no. They want to know if they can go forward and those examples are exceedingly comforting as counsel to be able to say, well, the regulation says this. Here is the regulation. You know, follow this and as long as you stay within the parameters of this example, then you should be good to go. And that helps everybody.

MS. VANN: Yes, I agree with that. This is Rae Vann from EEAC.

Particularly when you're talking about an area that not a whole lot of people have the depth of expertise on. I don't know a whole lot about genetics and genetic testing and things like that from a technical aspect. And new terms, new concepts can be quite intimidating to first-line supervisors, managers, people who are having to make decisions right on the spot. So, to the extent that the EEOC with all of the knowledge and expertise that it brings to the table, can provide some real-world examples of how particular aspects of the law would play out and how they should be dealt with by the employers, I think that would be very helpful.

MR. GRUBER: This is Jeremy Gruber. And I think that's quite true.

I'd like to remind everyone when we've been talking about the exceptions to the Rule prohibiting the acquisition of information that the Rule prohibiting acquisition of information itself does not have an intentional requirement. And therefore, it's going to be particularly important that examples be given for employers on how to not run the risk of violating GINA. That intentional being left out of that requirement was meant to make sure that the exceptions were limited.

If there was an intentional requirement in the Rule itself, the exceptions would have almost swallowed the Rule. The exceptions are not meant to swallow the Rule prohibiting acquisitions of genetic information, in fact, they were meant to be extremely limited and the list that was provided in the law was meant to be exhaustive.

And so I would hope that the regulations provide examples of ways that employers, when they are trying to acquire information, for example, when I was talking about trying to meet a reasonable accommodation request or after a conditional offer of employment had been made, language that employers could use to make sure that their request did not run afoul of GINA. Otherwise, an employer could simply ask in more general terms for information with the full knowledge that genetic information is likely to be included and not be subject to the Rule itself.

So, I want to make sure that affirmative language could be provided to employers so that they could protect themselves and make sure that the exceptions to the Rule are very limited.

ACTING VICE CHAIR GRIFFIN: Jeremy. Jeremy, let me just say I know, you know, when you raise concerns about the water cooler exception. So something -- an example would actually maybe goes into a level of questioning by the employer after they hear from someone that, you know, crosses the line would be good for employers to know. Something like that?

MR. GRUBER: Yes. Exactly. Because an employer, like I said, there's no intent requirement.

ACTING VICE CHAIR GRIFFIN: Right.

MR. GRUBER: An employer who asks for information and then acquires genetic information as a result of that request, runs in violation of GINA. There's no requirement that an employer be acquiring information with the intent to discriminate. There's no rule that the employer be acquiring information with the intent to even acquire genetic information. But the fact that they're acquiring genetic information to begin with, violates the rule itself.

ACTING VICE CHAIR GRIFFIN: Right.

MR. GRUBER: So, it's going to be particularly important that employers are provided with language so that they can make that distinction.

MS. BARUCH: This is Susannah Baruch speaking. And I would endorse Jeremy's thoughts. I think it would be helpful for employers and employees alike to know that there is some guidance in place and some magic words that would help provide clarity about what are appropriate and what are inappropriate ways of approaching this issue.

I think that in the context of the definitions, that's another area where specific examples are going to be very helpful. One issue that has come up is -- well, what is a manifest disease mean exactly in the context of genetic testing where in some cases in medical practice, a genetic test can actually be used to confirm the diagnosis where a patient is already showing signs and symptoms. So, an example that says that the presence of signs and symptoms has to be there for a genetic test to be taken out of the protection would be a helpful example to give of what is meant.

ACTING VICE CHAIR GRIFFIN: Thank you.

I can't see that fabulous little time available if the light's on it. So, is it alright if I proceed with one more question?

ACTING CHAIRMAN ISHIMARU: You know, let me turn to Commissioner Barker first and then I'll come back to you.

ACTING VICE CHAIR GRIFFIN: Okay.

COMMISSIONER BARKER: I'll defer to Chris if she wants to go ahead and do that.

ACTING CHAIRMAN ISHIMARU: Commissioner Barker has deferred to you on the phone.

Go ahead.

ACTING VICE CHAIR GRIFFIN: Well, the only other thing I wanted to get a little more discussion about is the issue that, Andy, you raised around training.

I am proudly a class of the original ADA network training that the EEOC and the Department of Justice embarked upon when the ADA was passed. And I was lucky enough to be in that train-the-trainer session in D.C. I was in law school at the time and I couldn't -- I remember thinking, God, this training is more rigorous and more difficult than most of my law school classes. It was a great, great training and a great opportunity. And I'd love to do something like that again. Can you talk a little bit about, you know, what you were envisioning when you testified about, you know, combining the ADA Amendments Act as well as even the Mental Health Parity Act, you know, that I know Labor is responsible for, but maybe a little bit about how you would see that playing out?

MR. IMPARATO: Sure. Thank you. This is Andy with AAPD.

I think, you know, again, this is something that we at AAPD have been interested in seeing happen going back to the Clinton Administration.

The law has changed a lot and is changing a lot. And the notion that you would invest in major training once for a new law like this that is going to go through a lot of interpretations; it just doesn't reflect the reality of the need out there.

We do have disability business, technical assistance centers and other entities out there that do training. But EEOC is the expert on what these new laws mean and I think something that has the imprimatur of EEOC is particularly powerful.

And, you know, again as Stuart alluded to, a lot has changed since the early '90s in technology too. There's a lot that EEOC can do using the Internet, you know, using different ways of disseminating information that really was just kind of getting started when the network training was done.

So, Chris, I think it's a matter-- I would love to see a multi-agency effort here of really looking at what's the needs, what are the technological tools that we have available to all of us, what are the field infrastructures that we have available to all of us and how do we leverage all of this to get this information out there in a way where we're, you know, saturating the market, if you will, and people in the protected class know their rights?

I remember the National Organization on Disability did a study, I think, in '95 where they found about half of the people protected by the ADA had even heard of it. So, there's definitely a need to kind of be out there letting people know what their rights are.

And certainly in the genetics area I think there are a lot of people that have gene-linked conditions that don't know the law passed, that don't know that they have protections and they are taking that ignorance with them when they're making decisions about whether to get a genetic test.

ACTING VICE CHAIR GRIFFIN: Yes. Great.

I'd also like to remark about former Chair Earp's Youth-at-Work initiative because as I sit here and think about that training, you know, having a special focus on train-the-trainer for young people with disabilities would be really, really good as well as, you know, training for all youth at probably the high school level as they start, you know, getting jobs in the summer and during the school year and really begin building their resume and their career. It would be important to let them know as well.

So, thanks. That's actually helpful.

MR. IMPARATO: And just quickly, Chris. This is Andy again.

One thing on the youth training that I think also would be helpful is helping young people know about the dangers of what's on your social networking site when you later are applying for a job or for, you know, higher education or whatever you may be applying for.

I think there's a lot of public information that's out there now about young people, some of which is genetic or health-related. And I just think a lot of young people aren’t thinking about that as they are, you know, building their Facebook pages or whatever it is.

ACTING VICE CHAIR GRIFFIN: You're right. That's actually a very good point.

Well, thank you.

ACTING CHAIRMAN ISHIMARU: Thank you.

Commissioner Barker?

COMMISSIONER BARKER: And I just want to say Mr. Imparato, I agree with your comments about Facebook and other Internet sites because not just from the standpoint of genetic information but young people need to be aware of the general message they're sending about who they are for potential employers when they put some of these, you know, photos on there that may be cute when you're 18, but when you're 25 and you're looking for a serious job, you're wishing it weren't on there.

Several questions. One thing that I think Mr. Gruber brought up, might have been Ms. Baruch about, but I think it was Mr. Gruber, about the whole issue of an employer's restrictions on the requirement now that he, when it comes to potentially hazardous workplace, that he cannot require testing, it has to be voluntary. And you're pointing out, you know, the challenges that presents from the standpoint of what the employer does, with an employee who says no to that testing. And whether that employer has a right to reassign him and particularly if

there is no reassignment for which he's qualified that pays him at the same compensation level.

And I'd be interested in hearing from Ms. Elliott and Ms. Vann of what you think an employer -- what the balance is there? What employer -- has the right or should do when an employee says no, yet an employer may be stuck in the situation of potential liability if he leaves that employee in that particular location.

MS. VANN: Well, as a threshold matter, I think it should be recognized by all that an employer has the right, the duty, the obligation to run its business. It doesn't have the right to discriminate.

I don't read GINA as imposing any reasonable accommodation requirement. I am an employer so I don't see an issue with an employer being able to transfer that person out as long as there's a legitimate business reason for doing so.

There has to be a line drawn that continues to enable employers to do what they are supposed to be doing in terms of their actual business practice. And it cannot be the -- it cannot be the case that an employer can just be hamstrung in its ability to direct its workforce, simply because someone refuses to move out of a job that -- or wants to move out of a job that poses some health risk or something like that with respect to this particular provision of the law.

COMMISSIONER BARKER: Ms. Elliott?

MS. ELLIOTT: And, again, I'm Karen Elliott.

I think I'd like to understand a little bit better the circumstances when we're talking about with an employer who perhaps works with hazardous materials, wants to make sure -- get the employees tested to make sure that they are still healthy, haven't been exposed and have manifestations from whatever chemical or something such as that. Is that what you're referencing?

COMMISSIONER BARKER: Yes. I mean certainly not an employer who for no reason --

MS. ELLIOTT: Right.

COMMISSIONER BARKER: -- goes through and requests testing.

MS. ELLIOTT: And obviously I represent the employer's perspective on this. But I'm also an employee as well. And I think that as long as -- I think an employer should be able to do that. But I think an employer needs to make sure that they have educated their workforce for why. I think that goes along with the educational requirements. And if, for example, we now have to educate in the workplace about ADA and non-harassment issues. So, I can see an educational component. In that way employees are educated about why this is happening and what their rights are. Just as in non-harassment, if you feel like your rights have been violated, there's a procedure -- internal procedure that's built in to protect you as the employee. I can see that working out very similarly here if the employee feels that the employer has misused the test results in a manner.

But I do believe that the two can work together for both the employees as well as the employer's benefit.

COMMISSIONER BARKER: Are you saying that an employer if he has reason to feel that there may be a danger would have the right to transfer that employee even if it means a lower level of compensation for that employee?

MS. ELLIOTT: If it's a lower level of compensation? No. I think that they would have to -- if the only reason, I think that would be discriminatory if the only reason was because of the genetic testing or how they were impacted by the work.

COMMISSIONER BARKER: Well, that's my whole point. It's a balancing.

MS. ELLIOTT: Right.

COMMISSIONER BARKER: I mean, you know, on the other hand are you going to say that the employer has to expose himself and his company to liability if that employee is left in that position, and later contracts, you know, lung disease or something that is a workplace hazardous condition.

MS. ELLIOTT: Well, I think that’s a very slippery slope. You know, an employer -- and I think that's exactly why we're here.

Employers sometimes get overly energetic in how they're viewing those situations for their protection and they end up crossing the line and harming an employee.

It would be hard for me. I mean, you'd either -- the employee is qualified for the position and has to be able to do the position. If the employee is -- I guess I'm trying to think of what specific situation would occur where employee A would be impacted differently than employees B, C and D by the same work environment.

Employee A would have to have some genetic proclivity, I guess, you know, to have that disease or that manifestation.

As an employer, boy, I sure wouldn't want to be making those distinctions with that employee. I think you need to be able to protect yourself, but not to the point -- as an employer, I would never want to get into that level of information, medical information or decision-making with the employee's health issues. I think they're either qualified for the position or they're not qualified and I'd hate to go any further than that.

MS. VANN: Well, let me be clear and I agree with that. I don't mean -- I certainly didn't mean to suggest that an employer would be justified in basing its employment decisions solely on some genetic information. But if you have an employee who is having serious medical issues as a result of performing in, you know, a hazardous job and you request testing be done to ensure that that person can continue to safely perform the job and that person refuses, I think an employer would be well within its right on that basis. It's almost a direct threat type of analysis if you will on the basis of its concern about the employee being able to perform the job in a manner that is safe for him or her as well as safe to other people without concern of a potential GINA violation.

MR. GRUBER: I'd like to add the-- just to be clear on what the plain language of GINA says.

GINA does not allow an employer to require an employee to have a genetic test when they're in a potentially toxic environment. That is -- plain language is not allowed under -- the question really remains is, what can an employer do for an employee who refuses to take a genetic test.

COMMISSIONER BARKER: That's exactly my question.

MR. GRUBER: At that stage the employer nor the employee in many cases would have any specific knowledge as to whether that employee was at any heightened risk for acquiring any type of genetically based disease.

At this stage, the employee simply is refusing to participate in a test that might reveal the predisposition to disease that might be affected by the environment.

And when Congress put that voluntary language in, it was quite intentional. And, in fact, I don't believe that originally that language was there in earlier draft versions. And that language was included because Congress believed quite strongly that the employee should have the control over their destiny, not the employer.

So, it's my belief that with that intent for an employer to want to put that employee in another position, that employer should be required to make that person whole, that there should be no penalty for, in essence, for refusing to engage in a genetic test that is their protected right to do under GINA.

COMMISSIONER BARKER: I guess the natural flip side of that, Mr. Gruber, then is that if an employee refuses to take the test that that employee has effectively waived any liability action he may have in the future against the employer for leaving him there.

Would you agree to that?

MR. GRUBER: I'd have to think about that more. That's a big -- if. That was --

COMMISSIONER BARKER: It's a complicated question.

MR. GRUBER: That was certainly not contemplated under the discussions that I'm aware of that this right to refuse was predicated on necessarily giving up any rights for protection against an employer who might have been engaging in practices that could affect their health.

In fact, I want to make clear that this area certainly by no means protects an employer from any type of act that was in violation of the health and safety of their employees generally.

COMMISSIONER BARKER: Certainly. Absolutely not.

MR. GRUBER: And so --

COMMISSIONER BARKER: But you know there are situations, Mr. Gruber, where there are conditions that exist in a workplace that even if an employer is following OSHA standards, they may for certain persons cause a heightened risk. And I think that implicit in the right not to give that -- not to submit to that medical exam is the result that in declining that you are also declining an opportunity to find out if you are yourself at risk. And so that would naturally be, would have an effect if you sought to sue your employer later on for not moving you.

MR. GRUBER: Well, I'd like to add that over the course of many years of discussing the toxic exposure exception, with many, many experts across the country trying to come up with examples of how this would actually be in effect in the workplace, only one single situation related to chronic beryllium disease, which there is only a handful of companies in the country that mine beryllium. And there's a genetic predisposition to chronic beryllium disease that give that heightened exposure to beryllium mining might turn into this disease.

That's the only example of many years of discussions where toxic -- where a genetic predisposition could manifest itself as a result of toxic exposure.

So, the actual cases of where that might occur, at least at this stage, are extremely limited. So, I don't expect this to actually occur very often.

MR. IMPARATO: Jeremy, let me follow up on this. This is Andy with AAPD.

This to me is a good example where the science is going to move forward and we may have trouble finding examples today, but 10 years from now there may be a lot of things that employers are interested in doing in trying to identify people that will be at a certain risk for whatever.

And to me there's a lot of dangers here. One is, we don't want employers to have incentives to go on a fishing expedition to figure out who the ideal candidates are for certain work environments, and remove disincentives for them to make those work environments as safe as possible for everyone.

Also, and Susannah can certainly comment on this, I know that Francis Collins and Kathy Hudson and others talk a lot about this. There's a tendency in our society to engage in genetic determinism and where we assume that the genes are the key factor in determining whether something is going to happen and that's not the way the science works. You know, there's a lot of factors that could go into play whether a particular work environment is going to result in somebody developing a particular condition.

So, I guess I would encourage you going back to the Vice Chair's question to think about examples that can help deliver the basic messages to employers that you want delivered. Don't go on a fishing expedition and don't read a lot into genetic information that, you know, the science probably doesn't support.

And, Susannah, I don't know if you want to say more about that. But I know that's a danger that's out there.

MS. BARUCH: It is, indeed, and even in the case of beryllium disease there's differences of opinion as to the link between the genetic mutation and the development of the disease.

Environmental factors are often critical in the way disease develops often much more so than the genetic mutation. And in listening to the discussion among people who are more experts in the employment law part of this issue than I am, what strikes me is that in considering whether to take away the possibility of employer liability later on, if the employer offers a test up front, you are increasing the incentive for the employer to look for as many tests as possible that may or may not be based on solid science.

Certainly today there's not a lot of genetic tests that are available. We saw one not so good genetic test offered in the Burlington Northern case. I think that we have to be mindful of the balancing act as you said in thinking about where genetic testing makes sense and where it actually could be used in itself as a tool for discrimination.

MS. VANN: Just to go back to your example for a moment, Commissioner Barker, if you have an employer who, for legitimate business reasons, asks an employee to submit to a medical examination, not a genetic test --

COMMISSIONER BARKER: Not a genetic test.

MS. VANN: And that employee refuses, the employer should not be barred under GINA and I don't believe that the text of the law would support an employer -- barring an employer from removing that person from the position for a legitimate business reason. I just want to be clear on that.

And, furthermore, I appreciate the point about the NSF and the legislative history discusses that case at length, but that case was 10 years ago and we simply do not see that sort of thing happening in the workplace.

MS. ELLIOTT: And that follows on my qualified -- the medical exam is given to make sure that that individual is qualified -- MS. VANN: That's right.

MS. ELLIOTT: -- for a position which has a job description -- specific job description elements for qualification.

So, I think our comments are together on that.

MR. GRUBER: Though I'd like to add as I said in my comments.

In contrast to the Americans with Disabilities Act, there is no job-related exception under GINA and so the Commission must be mindful in issuing regulations that there is no exception for job-related and that employers will have to be particularly mindful in their request for information that that does not occur.

COMMISSIONER BARKER: These are very difficult issues that will have to be worked through.

Thank you very much.

ACTING CHAIRMAN ISHIMARU: Thank you very much.

Madam Vice Chair, any other questions?

ACTING VICE CHAIR GRIFFIN: No. I'm actually fine.

Thank you.

ACTING CHAIRMAN ISHIMARU: Great. Well, let me thank again the panel. This has been very helpful. I think we've started to uncover, you know, various issues that will be the subject of comment through the comment period and the goal of this hearing was to start the discussion. And we look forward to a vigorous round of comments from the public.

I want to thank Sharon Alexander of my staff who took the lead in our office in pulling this together again on short notice and did a fabulous job. And I wanted to thank her.

I want to thank our colleagues in the Office of Legal Counsel for their help and the panelists for coming to share their expertise with us today.

The comment period will be open for 60 days once it's published in the Federal Register. We look forward to receiving those comments and hopefully soon thereafter issuing a final rule that will be helpful to the process.

I believe now we are going into recess.

Ms. Wilson, do we need to do anything special before we do that?

MS. WILSON: This concludes the open session of the Equal Employment Opportunity Commission meeting. There will be a recess and a press availability before reconvening for a closed session. Only persons with a need to know should remain in the room.

Thank you.

(Whereupon, the above matter was concluded at 12:07 p.m.)