Consumer Privacy

Ten privacy and consumer groups, including the World Privacy Forum, unveiled a consensus document outlining key consumer rights and protections in the behavioral advertising sector. The document is directed toward the Federal Trade Commission, and urges the FTC to take proactive steps to adequately protect consumers as online and other forms of behavioral tracking and targeting become more ubiquitous. The consensus document was filed with the Secretary of the FTC and its commissioners. Behavioral advertising is the focus of the FTC’s eHavioral Advertising Town Hall meeting taking place November 1-2 in Washington, D.C. The network advertising sector has a self-regulatory plan, the Network Advertising Initiative, in place, and has had this plan in place since 2000. The consensus document addresses the many areas where the NAI plan has failed to protect consumers.

iPledge Program | FDA — The World Privacy Forum testified before the Dermatologic and Ophthalmic Drugs Advisory Committee and the Drug Safety and Risk Management Advisory Committee of the Food and Drug Administration regarding privacy issues related to iPledge, a mandatory program for patients taking the drug Accutane or isotretinoin generics. The FDA has stated that the program, which it requires four drug manufacturers to have in place, does not fall under HIPAA. The program collects substantive amounts of patient information. The Forum urged the FDA to set privacy standards for all RiskMAPs in general, and to resolve privacy issues in the iPledge program specifically. The Forum requested that all marketing provisions of the iPledge program privacy policy be removed, that patients be expressly informed the program does not fall under HIPAA, and that patients be given a printed copy of the iPledge program privacy policy, among other requests.

Top ten opt out list — This is a list of what top things to opt out of, and how to opt out. Millions of people have heard about the Do Not Call list, an opt out list that gets people off of telemarketing lists. But many fewer people have heard about the other opt outs that are available, like those that can take people out of data broker lists or opt outs that can stop schools from giving out directory information like email and home addresses. Opting out can range from the not-too-difficult (the Do Not Call list is a fairly simple opt out) to the challenging. This list is meant to simplify the information about which opt out does what, to help decide if a particular opt out is the right choice, and how to go about opting out.

FDA privacy standards – RiskMAPs – World Privacy Forum executive director Pam Dixon testified at an FDA/AHRQ joint public workshop about the need for the FDA to set robust privacy standards for drug risk minimization programs, which are put in place for drugs the FDA has determined to be high risk in some way. Drug risk minimization programs (like the iPledge program for the acne drug Accutane) are not typically covered by HIPAA, and some programs have a privacy policy that allows marketing use of patient information collected as part of the risk program. This kind of marketing activity would not be allowable if the programs fell under HIPAA, and Dixon’s testimony stated that patients in these programs should have the same kinds of privacy protections as HIPAA covered programs, and that marketing activities involving patient information should not be allowable in these programs.

Genetic privacy | SACGHS — The World Privacy Forum gave testimony to the Secretary’s Advisory Committee on Genetics Health and Society regarding privacy issues stemming from direct-to-consumer advertising and consumer-initiated genetic testing. The World Privacy Forum noted that a great deal of consumer health data circulates outside the protections of HIPAA, and a substantial market for this kind of consumer health data already exists. Genetic data about consumers that is acquired outside the clinical context and is not subject to the protections of HIPAA (for example, through consumer-initiated genetic testing) will likely not be any more protected than other forms of consumers’ health-related information from the current demands of the market. However, the consequences of leakage of genetic information about consumers into the marketing stream could have potentially negative consequences for both those consumers and their blood relatives. The World Privacy Forum urged the committee to include specific recommendations about privacy in its upcoming report to the Secretary, and also urged the committee to work with other federal agencies to set up a pre-market oversight structure that includes significant and meaningful privacy protections for genetic testing occurring outside of the protections of HIPAA.