Sensitive Data issues

NIST report documents undeniable demographic effects in face recognition systems

WPF Press Release: NIST has issued extensive scientific documentation of demographic effects in face recognition systems in its new report, Face Recognition Vendor Test Part 3: Demographic Effects. The detailed findings in the NIST report are troubling. World Privacy Forum calls on the face recognition industry to accept, acknowledge, and address the new NIST findings, and calls for new multistakeholder work as well as significant safety guardrails.

WPF files comments on wellness programs and privacy: urges EEOC to address privacy challenges

The World Privacy Forum filed comments with the Equal Employment Opportunity Commission about wellness programs and related privacy impacts to individuals. Many Americans now take part in employer wellness programs, and they are increasingly and justifiably concerned about the sensitive information these programs are gathering, sometimes in return for incentives such as discounts on pricing for health insurance. These comments to the EEOC address some of the most significant challenges individuals face, including voluntariness, fairness, due process, and information sharing outside of HIPAA.

WPF urges Big Data approach that addresses vulnerable populations

The World Privacy Forum's recent public comments to the White House regarding Big Data focus on using a foundation of Fair Information Principles to address issues connected to bias, error, and privacy regarding big data as applied to vulnerable populations. The comments also discuss large medical research data sets, and ...

US Supreme Court delivers opinion about GPS tracking

01/23/2012 GPS tracking | United States v. Jones -- The US Supreme Court unanimously ruled that police must get a warrant before using GPS devices to track criminal suspects. This case was narrow and dealt specifically with a GPS device physically attached to a suspect's vehicle. The concurring opinion of Justice Sotomayor points out that the subtler issues of digital era tracking were not dealt with in this case, for example, cell phone tracking, web site tracking, etc. She wrote: "More fundamentally, it may be necessary to reconsider the premise that an individual has no reasonable expectation of privacy in information voluntarily disclosed to third parties. E.g., Smith, 442 U. S., at 742; United States v. Miller, 425 U. S. 435, 443 (1976)." She continued: "This approach is ill suited to the digital age, in which people reveal a great deal of information about themselves to third parties in the course of carrying out mundane tasks."

WPF comments about Personal Health Records and online advertising

Health privacy -- The World Privacy Forum filed comments today about how medical records and other health information is intersecting with online advertising and online activities. The WPF comments were filed with the Department of Health and Human Services in response to its request for comments on personal health records, privacy, and social media.

Public Comments: September 2010 - Joint comments on the Proposed Modifications to the HIPAA Privacy, Security, and Enforcement Rules under HITECH

In our view, the Department’s proposed changes to HIPAA regarding marketing are contrary to the law. Current law requires that paid communications for any marketing should be allowed only on an opt-in basis. We oppose the Department’s proposed regulation that would allow communications paid for by third parties who are not the entities whose product or service is being described in the communication.

WPF files two sets of key comments on HIPAA privacy rule

Health privacy and HIPAA -- The World Privacy Forum filed two sets of detailed regulatory comments on recently proposed changes to HIPAA. The first comments focused on proposed changes to HIPAA in the area of marketing patient information. The proposed changes would be harmful to patient privacy, and are contrary to the law. WPF was joined in the marketing comments by the Center for Digital Democracy, Consumer Action, Consumer Federation of America, the Electronic Frontier Foundation, Privacy Activism, Privacy Rights Clearinghouse, and Privacy Times. The second set of comments WPF filed included the comments on marketing as well as on additional provisions that would be problematic if enacted.

Genetic regulations and privacy: Department of Labor

Genetic privacy -- The World Privacy Forum filed comments today with the Department of Labor requesting that the DOL expand its protections of how genetic information may be used by health insurance companies or group health plans. The World Privacy Forum urged the DOL to include genetic information posted on social networking sites in its consideration of the GINA regulations.

Medical data breach rule needs more work; World Privacy Forum files comments with HHS requesting changes

Data Breach | HHS HITECH Breach Notification -- The World Privacy Forum filed comments on the HHS data breach rulemaking and asked for substantive changes in several areas. In particular, WPF asked HHS to expressly state a requirement for a breach risk assessment in the final rule itself, and to set a requirement that the risk assessment must be conducted by an independent organization. The WPF also asked that HHS set breach risk assessment standards so that there is some uniformity and guidance as to what constitutes an appropriately rigorous risk assessment when a breach occurs. In the comments, WPF also discussed the relationship between medical identity theft and medical data breach and how this impacts patients and consumers.

IAB releases guidelines for controlling behavioral advertising practices

Self regulation -- The Interactive Advertising Bureau has released its self-regulatory guidelines for online advertisers. There are some bright spots in the new guidelines. In the area of sensitive information, especially regarding health privacy, the guidelines are weak and need improvement. The IAB definition of sensitive health information is weaker than the definition of sensitive information already adopted by industry in the formal NAI agreement. Additionally, the new IAB guidelines rely on weak accountability standards. WPF urges the IAB to re-examine the sensitive health definition, provide more accountability, and to include consumer input in a meaningful way into the drafting process.

EU: Article 29 Working Party releases Opinion on social networking sites

Social networking and EU -- The Article 29 Working Party has adopted an important Opinion regarding social networking sites as of June 12. The opinion covers privacy, advertising, sensitive information, and other issues relating to online social networking. Regarding sensitive data, the Article 29 Working Party stated: "Data revealing racial or ethnic origin, political opinions, religious or philosophical beliefs, trade-union membership or data concerning health or sex life is considered sensitive. Sensitive personal data may only be published on the Internet with the explicit consent from the data subject or if the data subject has made the data manifestly public himself." Regarding use of sensitive data to target advertising, the Article 29 opinion stated: "The Working Party recommends not using sensitive data in behavioral advertising models, unless all legal requirements are met." The opinion also stated that the EU Data Protection Directive generally applies to the processing of personal data by social networking services, even when their headquarters are outside of the EEA, and that social networking service providers are considered data controllers under the Data Protection Directive.

Public Comments: September 2008 - World Privacy Forum urges more attention to the protection of research study participants

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."

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.

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.

World Privacy Forum requests that the new National Disaster Medical System protect all patient information to standards at least equal to HIPAA

National Disaster Medical System | Privacy Act of 1974 -- The World Privacy Forum has filed public comments with the Department of Health and Human Services requesting that its new National Disaster Medical System protect all patient information to at least the baseline protections that HIPAA affords, including the HIPAA security and privacy protections. Currently, the new system does not do this, even though the system is housed at HHS, the agency which promulgated the HIPAA standards. The National Disaster Medical System currently contains overbroad routine uses which could potentially result in significant privacy and even public health issues. For example, public health information will not be able to be disclosed under the National Disaster Medical System as the system is currently organized. Additionally, some of the current routine uses in the system would authorize disclosures that would be illegal under HIPAA. For example, Congressional disclosure of a HIPAA record requires a written authorization, something the new system does not require.

WPF comments on proposed guidance on Confidential Information Protection and Efficiency Act of 2002 (CIPSEA)

e-Government /CIPSEA -- The World Privacy Forum submitted comments to the Office of Management and Budget regarding proposed guidance on Title V of the e-Government Act. The proposed guidance did not address the relationship between CIPSEA and the USA PATRIOT Act Section 215, and guidance regarding identifiability and the Privacy Act of 1974 needs to be further refined. WPF suggests that OMB consider developing a formal statistical confidentiality seal controlled by a federal agency. The purpose would be to provide an identifiable marker that would tell individuals if the information they provide will receive the highest degree of confidentiality protection available under law.

World Privacy Forum Comments on Proposed Policy for Genetic Database

Genetic privacy -- Genome-wide association studies present complex and challenging privacy issues. The National Institutes of Health, in a published request for information, asked for public comment on its proposed policy regarding its support and management of a central genomic repository for genome-wide association studies. In comments filed with the National Institutes of Health, the World Privacy Forum raised concerns about the proposed NIH policy in the specific areas of genetic identifiability, secondary uses of the genetic data, oversight, legal protections, and informed consent.

World Privacy Forum Comments on Privacy Issues Relating to a Nationwide Genetic Research Project

Genetic privacy -- The collection of DNA material from 500,000 to 1,000,000 or more individuals as part of a large U.S. medical research project raises many challenging ethical, legal, and privacy issues. An advisory committee reporting to the Office of the Secretary of Health and Human Services ( the Secretary's Advisory Committee on Genetics, Health and Society) has published a detailed analysis of the issues such a project and its associated databases and biobanks would raise in a draft report. The committee's final report and policy recommendations will be submitted to the Secretary of HHS. The World Privacy Forum has submitted public comments on the draft; the comments include key policy recommendations. The Forum's recommendations include the need to provide protection from compelled disclosure of information, the necessity for a full-time project privacy officer with enforcement power, the need to address identifiability issues, and the need for a far-reaching and robust privacy policy that exceeds the requirements of HIPAA, among other recommendations.