Genetic Privacy

Keep my genes private: World Congress panel presentation

Genetic privacy — The World Privacy Forum presented a talk at the World Congress in Washington D.C. today on the intersection between genetic privacy and marketing, and on genetic issues and medical identity theft. The presentation exposed the list marketing activities surrounding health care data, and examined how the current loopholes in the recently passed Genetic Information Nondiscrimination Act (GINA) would not necessarily ease issues with incidental collection and use of genetic information.

Public Comments: December 2008 – GINA – Genetic Information Nondiscrimination Act

In response to a Request for Information (RFI) from U.S. federal agencies regarding the recently passed GINA (Genetic Information Nondiscrimination Act), the World Privacy Forum filed a detailed response with suggestions on what aspects of GINA need clarification. The comments focus on a number of privacy issues the RFI raised, including model privacy notices and the issue of what the GINA statute calls “incidental collection” of genetic information. Currently, GINA states that some kinds of information are exempted from being considered as regulated for medical underwriting purposes. For example, medical information gleaned about patients for underwriting purposes from medical databases is regulated. But medical information gleaned about patients for underwriting purposes from, for example, marketing lists containing robust patient information may be unregulated if the law is not clarified in the regulatory process. The World Privacy Forum urged HHS and the Department of Labor to substantially clarify what constitutes “incidental collection,” and urged the agencies to consider lists containing identifiable patient information to be considered in the same category as a “medical database.”

Council for Responsible Genetics convenes experts and the public for database and genetics conference

Genetic privacy — The World Privacy Forum participated in a Council for Responsible Genetics (CRG) conference on genetic databases at New York University. The groundbreaking conference focused on key issues of race and genetic databases, fairness, accuracy, and privacy. The World Privacy Forum discussed a paper by Dr. Harry G. Levine, Drug Arrests and DNA, noting that innocent victims of medical identity theft may be arrested for the “drug seeking behavior” of the criminals impersonating them.

Key genetic oversight report released; includes changes based on World Privacy Forum comments

SACGHS | Oversight of genetic testing — The Secretary’s Advisory Committee on Genetics, Health and Society (SACGHS) released its final report on Oversight of Genetic Testing (U.S. System of Oversight of Genetic Testing: A Response to the Charge of the Secretary of Health and Human Services, April 2008, PDF, 276 pages). This is a substantial, thoughtful report that is likely to have a long-term impact on the field. The World Privacy Forum submitted formal written comments regarding this report when it was in draft form, and also appeared before the Committee in person in February of 2008 to discuss additional information relevant to the report. The final report reflects the World Privacy Forum comments and testimony. The report now includes a discussion about Direct to Consumer advertising and marketing as well as related privacy issues. The discussion in the final report also now acknowledges the implications of Direct to Consumer marketing of genetic tests regarding online privacy. The final report also reflects generally increased attention to privacy issues.

World Privacy Forum to speak at Federal Trade Commission health workshop

Health Care Innovations workshop — The World Privacy Forum will be speaking at an upcoming FTC workshop on the topics of medical identity theft, personal health records, and direct-to-consumer genetic tests and marketing. The workshop is April 24, 2008. Workshop information is available at the FTC web site.