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

Statement of Susannah Baruch, J.D.
Law and Policy Director
Genetics and Public Policy Center
Johns Hopkins University

Good morning and thank you for the opportunity to testify today. I am Susannah Baruch, the Director of Law and Policy at the Genetics and Public Policy Center, which is supported by The Pew Charitable Trusts at Johns Hopkins University. Our mission is to help policy makers and the public better understand and respond to the challenges and opportunities arising from rapid advances in human genetics and its application to healthcare. Previously, I was involved with GINA as Director of Health Law Policy at the National Partnership for Women and Families and on Capitol Hill as legislative counsel for Rep. Nita M. Lowey (D-NY). In 2000, I had the opportunity to provide testimony to the United States Senate on the topic of genetic testing in the workplace.

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, and 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 an individual may consider in deciding whether to take a genetic test, but the fear of discrimination must not be one of them.

Since GINA’s passage, we have led a collaborative effort with the National Workrights Institute and the Georgetown Health Policy Institute to provide in-depth analysis and technical assistance to federal policymakers on the implementation and enforcement of GINA. “Project GINA” as we call it, has followed closely the progress on GINA regulations related to Title I and we eagerly await the opportunity to see the NPRM you have released today.

Even before the passage of GINA, EEOC played a critical leadership role 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 provided robust analysis of many of the issues that underlie GINA. We thank you very much for the foundation you have built.

I have four main points to make.

  1. GINA need not and should not create a burden for employers. Employers who are already following good employment and HR practices in complying with existing laws such as Title VII, the American with Disabilities Act, and the FMLA should find that GINA’s prohibitions are consistent with those laws in terms of procedures and enforcement. We expect the regulations will provide assurance that this is the case.
  2. Definitions matter. For concepts like genetic test and genetic information and manifest disease, we hope that the EEOC, in coordination with DOL, HHS, and Treasury, will provide clear examples and remain flexible as science changes. We have commented extensively on this issue related to Title I regulations. For example, we believe that the regulations should state clearly that a “manifestation of a disease” in an individual must mean signs and symptoms in that individual, not just a genetic test result.
  3. Employers are prohibited from requesting, requiring, or purchasing genetic information, and we will be looking particularly closely at the way the exceptions to this rule are handled in the NPRM. In particular,
    1. We recognize that employers need clarity on what constitutes inadvertent acquisition of information.
    2. The NPRM should handle “wellness programs” carefully. We hope that EEOC will work with DOL/IRS/HHS regulators to provide guidance on issues overlapping Title I and Title II --particularly as these issues relate to wellness programs that impose substantial financial penalties and higher deductibles on participants. We believe the HIPAA nondiscrimination rules currently permit a great deal of discrimination based on health status and should be revisited, and we would welcome EEOC’s discussion of whether wellness programs currently authorized under HIPAA qualify as “voluntary” wellness programs under federal employment law.
  4. In considering section of GINA known as the “firewall” between Title I and Title II, the NPRM should reflect the reality that many Americans receive their healthcare benefits through their employer. Although federal law has always made a distinction between the employer and the employer-sponsored health plan, in reality, particularly in smaller companies, the same person controls HR functions such as hiring and firing, ADA or FMLA claims that may reveal medical and genetic information and the administration of health care benefits. Simply put, employees and employers need to know how to handle that reality. GINA’s rules are internally consistent between the Titles. Thus, although the legal technicalities may matter to you and me, the protection should be seamless to the individual: neither the employer nor the employer-sponsored health plan can request or require the information or use it to discriminate. The regulations should clarify what the firewall means and does not mean.

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