Health Privacy

SAN DIEGO, Ca., Sept. 24 — The World Privacy Forum’s latest report, Red Flag and Address Discrepancy Requirements: Suggestions for Health Care Providers, discusses the applicability of the new FTC regulations to the health care sector along with suggestions for providers. The report addresses newly issued regulations by the Federal Trade Commission that require financial institutions and creditors to develop and implement written identity theft prevention programs. Health care providers – whether they are for-profit, non-profit, or governmental entities – may have obligations under the new rules.

Human Subjects Research Protection (OHRP) — The World Privacy Forum filed comments with the Office of Human Research Protection urging the office to do more to protect the privacy of people who are subjects of research. The comments urge the OHRP to focus more attention on providing privacy-specific training for boards overseeing research, which are often weak in knowledge about the breadth of privacy issues in research. The WPF also voiced its strong support for certificates of confidentiality for research involving human subjects, stating that “nearly all research that involves identifiable health data or other personal data about individuals should have a certificate of confidentiality unless a researcher can state a substantive reason why a certificate is not appropriate for the study.”

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.

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.

Behaviorally targeted advertising | FTC proposed rules — The World Privacy Forum filed comments in response to the Federal Trade Commission’s proposed self-regulatory guidelines for companies targeting online advertising to consumers based on consumer behaviors. The WPF requested a separate, formal rulemaking process for determining how sensitive medical information should be handled online regarding behaviorally targeted advertisements. The WPF also discussed genetic data and requests for genetic tests, and noted that genetic information should be included in any definition of sensitive medical information. The WPF reiterated that the definition of personally identifiable information should include IP address, and encouraged the FTC to work from a rights-based approach regarding online advertising. The WPF also urged the FTC to include all fair information practices in any self-regulatory regime, and to enforce the regime directly.