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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.

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.

World Privacy Forum files comments on behaviorally targeted ads online; requests separate rulemaking for sensitive medical information

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.

Updated Consumer Tips for Medical ID Theft

Medical ID theft -- Based on interviews with numerous victims and others involved in the crime of medical identity theft, and based on our own work with victims, the World Privacy Forum has added some new information to its 2006 consumer tips for medical identity theft. We have also slightly updated some of the older tips based on new information. The Forum has also updated its medical identity theft landing page to reflect our new and ongoing work in this area.

Legal and Policy Analysis: Personal Health Records: Why Many PHRs Threaten Privacy

New publication | PHRs and privacy -- The World Privacy Forum has published a new legal and policy analysis examining Personal Health Records -- or PHRs -- and the privacy issues associated with them. This analysis, Personal Health Records: Why Many PHRs Threaten Privacy, was prepared by Robert Gellman for the World Privacy Forum. The analysis finds that significant, serious threats to privacy exist in some PHRs.

WPF Consumer Advisory: The Potential Privacy Risks in Personal Health Records Every Consumer Needs to Know About

Consumer advisory | PHRs and privacy -- The World Privacy Forum has issued a consumer advisory about the privacy of PHRs to help consumers understand and approach the complex privacy issues PHRs can raise. Consumers need to know that not all PHRs protect privacy in the same way, and some PHR systems can undermine consumer privacy in serious ways that consumers may not be expecting.

Personal Health Records: Introduction

Personal health records – or PHRs – are a relatively new phenomenon in health care today. As discussed here, a PHR is a health record about a consumer that includes data gathered from different sources (e.g., health care providers, insurers, the consumer, and third parties such as gyms and others) and is made accessible, often online, to the consumer and to those authorized by the consumer. Businesses large and small are moving to take advantage of the potentially lucrative new business model PHRs provide, especially as leveraged through the Internet. Some of the newest PHR players include large and well-known technology companies, but some health care providers, insurers, and employers also promote PHRs. There are dozens of different PHR vendors.

Personal Health Records: Discussion

The HIPAA privacy rule provides a degree of privacy protection for covered health records. The rule has problems and gaps, but it does establish minimum national privacy standards for disclosure, access, correction, and other elements of fair information practices. State laws that provide additional privacy protections remain in effect and can provide additional legal protections for privacy.

Personal Health Records: PHRs and Privilege

Many people are aware that health information may be privileged, but few – including some physicians – fully understand what that means. The physician-patient privilege (and the sometimes separate psychotherapist-patient privilege) offers some protections for confidential communications between physician and patient.

Personal Health Records: PHRs and Subpoenas

Health records, like just about any other record containing personal information held by a third party, can be subpoenaed under a variety of circumstances. For example, a consumer’s records could be sought in a tort suit (e.g., auto accident or medical malpractice), in a divorce or other family lawsuit, or sought if the records are relevant to someone else’s lawsuit. The rules governing subpoenas for health records are complex, and HIPAA includes some significant procedural protections.

Personal Health Records: PHRs and Marketing

Perhaps the biggest single concern about commercial PHRs is the possibility that a consumer’s health information will leak into the marketing system. The terms under which a PHR operates could allow the sale or rental of consumer information in the same way that magazines, catalog companies, magazines, charities, or other merchants and activities share information with limited or no consumer knowledge or consent. Consumers generally have some sense about how readily companies and agencies pass personal information around, but they do not expect the same kind of sharing when it comes to personal health information.

Personal Health Records: The PHR as a Depository

Some PHRs present themselves as a depository of health information under the control of the consumer. The suggestion is that the records have inherent privacy protections because the consumer has some choices or control over the record, including who may see, add to, or change the record. By contrast, covered entities under HIPAA can disclose health records to many institutions for many purposes without consumer consent. That is one of the controversial aspects of HIPAA. HIPAA allows many disclosures without the consent of – and indeed over the objections of – the consumer.

Personal Health Records: PHRs and Linkage

Some privacy protections exist because independent health care providers maintain separate records about consumers. A dentist has one set of records; a family doctor has another set. It will often be the case that the two sets of records are not linked or shared routinely. However, those who obtain health care from a single health maintenance organization may already have centralized records. Linkage of health records offers some advantages, but not all linkages are necessarily welcome to consumers.

Personal Health Records: PHRs and Security

Security is an important part of privacy. Are PHR records more secure? The answer depends on who maintains the PHR and whether the security of the PHR is sufficient. Information held by health care vendors and insurers is subject to the HIPAA health record security rule. For what it is worth, the HIPAA security rule has attracted less criticism than the HIPAA privacy rule. Whether any given health record keeper is actually doing a good job of complying is hard to say.

Personal Health Records: PHRs and Correction

One basic privacy right is the right to seek correction of personal information that is incorrect or incomplete. This is a difficult area for health records because health care providers do not like to change records, and they strongly resist removing information from a record. Often, the resistance is reasonable. For example, a preliminary diagnosis may turn out to be wrong, but the record of the diagnosis must remain in the record to explain a particular test or treatment.

Personal Health Records: PHRs and Consents for Disclosure

Under HIPAA, if a consumer wants to authorize a covered entity to disclose her records, she will usually be obliged to sign an authorization form. The HIPAA rule prescribes the content of the authorization form and its scope. That rule provides some protections because it makes it harder for a consumer to unknowingly sign a form authorizing the disclosure of health records. For example, if a consumer signs a one-sentence form authorizing anyone with records about the consumer to disclose the records to the bearer of the form, it is unlikely that any doctor or hospital would or should honor that form.

Personal Health Records: PHRs and Privacy Policies

For a non-HIPAA covered PHR, the privacy policy becomes a key document, if it is available. The privacy policy of a PHR vendor may tell consumers how the vendor plans to use personal information. It is possible that a commercial or advertising-supported PHR will do a good job of protecting its clients from uninformed or casual disclosures of personal or health information. It is also possible that a cautious client will not be able to evaluate a PHR vendor’s policy or practice.

Personal Health Records: Conclusion

PHRs that operate outside of HIPAA can negatively affect the privacy interests of consumers in various ways. The best to hope for is that a PHR will not make privacy significantly worse. However, it is not likely that even that weak standard can be met. The existence of electronically available and centralized health information outside the traditional health care system will attract new users and create new risks. The mere adding of health records to a PHR vendor’s files may undermine existing privacy protections of old records. Security is a concern for any electronic records. A consumer’s ability to control the disclosure of PHR records can easily be compromised. The consumer’s ability to correct errors in PHR records may be problematic. Advertising support may not meet a PHR’s profit goals unless at least some consumer information is available for close targeting of ads. Promised PHR privacy protections may vanish overnight if the privacy policy is changed.

World Privacy Forum, NCLC, and Consumer's Union file extensive comments regarding accuracy of credit reports

Financial privacy / credit reports -- The NCLC, Consumer's Union, and the World Privacy Forum filed extensive joint comments today regarding the proposed rulemaking, Procedures to Enhance the Accuracy and Integrity of Information Furnished to Consumer Reporting Agencies under Section 312 of the Fair and Accurate Credit Transactions Act. The results of the proposed rulemaking will have a significant impact on how the accuracy of credit reports is defined for consumers, and will have a substantive influence over how consumers may handle credit report disputes directly with those who furnish information for the reports.

Opportunity for public comment on the accuracy of credit reports

Financial privacy | credit reports -- Consumers and organizations have an opportunity to submit public comments about the accuracy and integrity of credit reports. Until February 11, the Federal Reserve Board, the Federal Trade Commission and other banking agencies will be accepting comments on their draft rulemaking regarding how creditors and other furnishers provide information to consumer reporting agencies, and which types of direct disputes they must handle. This proposed rulemaking is a key one; it defines what accuracy and integrity of information provided to consumer reporting agencies means, how disputes may be handled directly with the furnishers, and which types of direct disputes furnishers may ignore. The NCLC, Consumer's Union, and the World Privacy Forum have written a sample letter that may be downloaded and used or modified for the comments. To file your letter, submit your comments to the Board of Governors of the Federal Reserve System by mailing the comments to regs.comments@federalreserve.gov with the subject line "Docket No. R–1300."

Updates to Top Ten Opt-Out List

Opt-out | Financial privacy -- The World Privacy Forum has updated its popular Top Ten Opt Out list to reflect several new change made to the Direct Marketing Association opt outs. In the past, some of the DMA opt-outs, like the Direct Marketing Association's mailing preference lists, used to cost $1. That fee has now been removed for people opting out online. Please see item #3 on the Opt Out list for the complete update.

World Privacy Forum files public comments regarding oversight of genetic testing

Genetic privacy | SACGHS -- The World Privacy Forum filed extensive comments with the Secretary's Advisory Committee on Genetics, Health and Society (SACGHS) regarding its draft report on genetic testing oversight, U.S. System of Oversight of Genetic Testing: A Response to the Charge of the Secretary of HHS. The World Privacy Forum requested SACGHS pay more attention in its final report to the privacy consequences of unregulated genetic testing that occurs outside the health care sector. The WPF comments note that current and proposed remedies for the misuse of genetic information tend to focus on the use of the information within the health care treatment, payment, and insurance systems. What is crucially important is to analyze how to protect genetic information in the realm of commercial collection, maintenance, use and disclosures. Another area the comments discuss is the potential for new forms of fraudulent activity related to genetic testing (Phantom genetic testing, that is, genetic tests marketed to consumers that are not even real or viable genetic tests.) The World Privacy Forum specifically recommended that the National Committee on Vital and Health Statistics be tasked with looking at this matter, that an independent pre-market assessment mechanism is created for genetic tests offered outside the clinical setting, and that privacy be expressly discussed in the overarching recommendations in the final report.

Fair Information Practices (FIPS) page update

Fair Information Practices -- The World Privacy Forum has updated its page on Fair Information Practices to include the new work by Robert Gellman in this area. His article, Fair Information Practices: A Basic History, December 2007, is an important history of the development of Fair Information Practices. It includes information that even experts familiar with FIPs may not know.

New FTC statistics affirm World Privacy Forum's 2006 Medical Identity Theft report; give first robust medical identity theft statistics

Medical identity theft update -- The Federal Trade Commission released its national ID theft survey, which for the first time contains statistics specific to medical identity theft. According to the FTC report (p. 21), 3 percent of all identity theft victims in 2005 were victims of medical identity theft, which means of 8.3 million ID theft victims, approximately 250,000 people were victimized by medical identity theft in that year alone. The purpose of the World Privacy Forum 2006 report was to prove that medical identity theft existed, and was already occurring in large numbers. At the time the report was published, the crime of medical identity theft had not been specifically studied, nor was it understood to exist. The FTC statistics abundantly affirm the thesis and conclusions of the WPF report.