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 files comments on proposed changes to FERPA; requests changes to protect student and parent privacy

FERPA — The U.S. Department of Education has published proposed changes to its FERPA regulations, FERPA standing for the Family Educational Rights and Privacy Act. FERPA is a significant regulation that controls how students’ school records and “directory” information may be shared. The proposed regulations have one item the WPF is supporting, which is that SSNs are not considered part of the directory information. However, other aspects of the proposed regulation still need work to adequately protect students’ and parents’ privacy interests. The WPF commented in particular that schools should not be allowed to request and then store a full tax refund from parents in order to prove students’ eligibility. The Forum also requested that students’ electronic identifiers are not included in the definition of directory information. One area of substantial concern is that the Department of Education has not expressly provided that students who opt-out of having their directory information shared should not be penalized for opting out. Currently, the proposed regulations may be read to suggest that schools may be able to deny benefits, services, or even required activities to students who have exercised the right to opt-out of the publication of directory information. FERPA comments may be filed until close of business Eastern time May 8, 2008.

Public Comments: May 2008 – Proposed changes to FERPA don’t protect student and parent privacy

FERPA comments: WPF is concerned about the U.S. Department of Education’s proposed changes to its FERPA regulations, FERPA standing for the Family Educational Rights and Privacy Act. FERPA is a significant regulation that controls how students’ school records and “directory” information may be shared. The proposed regulations have one item the WPF is supporting, which is that SSNs are not considered part of the directory information. However, other aspects of the proposed regulation still need work to adequately protect students’ and parents’ privacy interests. The WPF commented in particular that schools should not be allowed to request and then store a full tax refund from parents in order to prove students’ eligibility. The Forum also requested that students’ electronic identifiers are not included in the definition of directory information. One area of substantial concern is that the Department of Education has not expressly provided that students who opt-out of having their directory information shared should not be penalized for opting out. Currently, the proposed regulations may be read to suggest that schools may be able to deny benefits, services, or even required activities to students who have exercised the right to opt-out of the publication of directory information..

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.