Public Comments

WPF filed comments with the Presidential Commission for the Study of Bioethics today urging the Commission to recognize the need for enhanced genetic privacy protections in a digital world. WPF noted that “The increasing identifiability of genetic data presents major privacy issues for research activities that must be acknowledged and addressed.” WPF suggested four key ways that Certificate of Confidentiality programs could be enhanced for privacy protection, and urged the Commission to speak out about the importance of protecting patient privacy in research activities involving genetic information. “The Commission should advocate providing patients with reasonable controls over research uses of their data as electronic records develop and spread throughout the health care system.” Public comments may be submitted to the Commission until May 25, 2012.

Genetic Privacy | Bioethics — WPF filed comments with the Presidential Commission for the Study of Bioethics today urging the Commission to recognize the need for enhanced genetic privacy protections in a digital world. WPF noted that “The increasing identifiability of genetic data presents major privacy issues for research activities that must be acknowledged and addressed.” WPF suggested four key ways that Certificate of Confidentiality programs could be enhanced for privacy protection, and urged the Commission to speak out about the importance of protecting patient privacy in research activities involving genetic information. “The Commission should advocate providing patients with reasonable controls over research uses of their data as electronic records develop and spread throughout the health care system.” Public comments may be submitted to the Commission until May 25, 2012.

WPF filed two sets of comments with the US Department of Commerce regarding the MultiStakeholder Process and the privacy topics to be taken up. The first set of comments were WPF’s formal filing of the joint Civil Society MultiStakeholder Principles on behalf of WPF and the American Civil Liberties Union, Center for Digital Democracy, Consumer Action, Consumer Federation of America, Consumers’ Union, Consumer Watchdog, Electronic Frontier Foundation, National Consumers’ League, Privacy Rights Clearinghouse, and US PIRG. The second set of comments were WPF’s own comments to the Department. WPF urged the Department to employ a fair process, choose focused topics, and to apply the full range of the Consumer Privacy Bill of Rights to each topic.

On Feb. 23, 2012, nine signatory organizations published a MultiStakeholder Principles designed to guide the NTIA MultiStakeholder Process, a self-regulatory process to develop voluntary codes of conduct with industry and civil society. The document states: “The US Department of Commerce is proposing a multi-stakeholder process for developing better applications of privacy principles. For the multi-stakeholder process to succeed, it must be representative of all stakeholders and must operate under procedures that are fair, transparent, and credible. We believe the following baseline principles will provide the multi-stakeholder process the legitimacy it needs to succeed.”

WPF filed two sets of comments with the US Department of Commerce regarding the MultiStakeholder Process and the privacy topics to be taken up. The first set of comments were WPF’s formal filing of the joint Civil Society MultiStakeholder Principles on behalf of WPF and the American Civil Liberties Union, Center for Digital Democracy, Consumer Action, Consumer Federation of America, Consumers’ Union, Consumer Watchdog, Electronic Frontier Foundation, National Consumers’ League, Privacy Rights Clearinghouse, and US PIRG. The second set of comments were WPF’s own comments to the Department. WPF urged the Department to employ a fair process, choose focused topics, and to apply the full range of the Consumer Privacy Bill of Rights to each topic.