Public Comments

Public Comments: December 2011 - WPF urges more consumer protection and redress in the Facebook FTC settlement

In response to the FTC's proposed settlement with Facebook over the company's multiple privacy violations, the World Privacy Forum has asked the FTC to make key changes. "We applaud the FTC for its work on the Facebook case," said executive director Pam Dixon. "We support many parts of the settlement. However, we urge the FTC to provide full redress for affected consumers by rolling back the privacy controls to the 2009 defaults, and we also urge the FTC to follow the 2004 Gateway Learning, Corp. precedent and require Facebook to disgorge profits they made from violating their privacy policy retroactively." The comment period is open to the public until December 30.

Public Comments: October 2011 - WPF urges HHS to do more to protect the privacy of medical research subjects

The World Privacy Forum filed extensive comments with the US Department of Health and Human Services about its proposed changes regarding the rules governing human subject medical research. In the comments, WPF noted that the HHS approach to privacy for research subjects was incomplete and did not use all Fair Information Practices. WPF strongly urged HHS to revise its proposal on a number of issues, including consent and the use of biospecimens in research. The World Privacy Forum is urging HHS to acknowledge that the realm of health data that is truly non-identifiable has shrunken remarkably, for example, biospecimens with DNA cannot be considered non-identifiable anymore. "In our comments, we are requesting that HHS give individuals the opportunity to make choices about the use of their own health data and specimens," said Executive director Pam Dixon. WPF also stated in its comments that "A central database with identifiable information about participants in human subjects research is a terrible idea." (See p. 21 of WPF comments.)

Public Comments: August 2011 - Proposed changes to the HIPAA Privacy Rule regarding Accounting of Disclosures under the Health Information Technology for Economic and Clinical Health Act

The World Privacy Forum today filed its comments on the proposed changes to the HIPAA privacy rule, supporting some proposed changes and suggesting additional changes to enhance patient choice. In particular, the WPF supports the new patient right to an access report that has been added (p. 4), and has requested that Health Information Exchanges also be required to provide accountings of disclosures to patients (p. 18). The WPF generally argued that HHS needs to look forward and allow changes in information technology to fully benefit patients by providing the facility for more accounting rather than less (pp. 2-3). If the HIPAA rule gives patients a greater ability to monitor how their information is used and disclosed, patients will pay attention and requests for accounting of disclosures will become more common.

Public Comments: May 2011 - WPF requests more information about Ceridian data breach and the FTC complaint process

The World Privacy Forum filed comments with the Federal Trade Commission regarding its consent decree against Ceridian regarding a substantial data breach. WPF has requested that the Commission present more facts in the case to the public, and has also requested more clarity about the FTC complaint process, noting that it is not a transparent process for the public.

Public Comments: May 2011 - Notice of Proposed Rulemaking for the Family Educational Rights and Privacy Act FERPA

The WPF filed detailed comments on the U.S. Department of Education's notice of proposed changes to the Family Educational Rights and Privacy Act. WPF has concerns that the increased sharing of student information that the proposed rule will allow will diminish student privacy in a significant and permanent way. WPF is urging the DOE to amend its proposed rule to establish increased privacy protections for sensitive student information held in databases and elsewhere.

Public Comments: April 2011 - WPF Files Joint Comments on California Health Information Exchanges

California has proposed regulations for health information exchange projects in the state. WPF has submitted comments encouraging more privacy protections, and we are joined in our comments by Privacy Activism and the Center for Digital Democracy. One key request in the comments is that California not allow patient consent to be waived in HIE projects. We are also requesting that California create a unified web listing of its HIE projects for increased transparency and to facilitate patient access to HIE information and policies.

Public Comments: January 2011 - Regarding Information Privacy and Innovation in the Internet Economy

The World Privacy Forum filed comments on the US Department of Commerce Green Paper today and urged the department to adopt a fair stakeholder input process that included consumers in a robust and meaningful way. WPF outlined seven specific steps for the department to take to ensure a fair process.

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.

Public Comments: August 2010 - WPF files comments on deeply flawed SEC plan

The World Privacy Forum filed comments today criticizing the SEC proposed regulations that would release an unprecedented amount of financial details about individual borrowers through the EDGAR database. The WPF was joined by other privacy, consumer, and human rights organizations in its comments, which focused on the privacy issues with the proposed regulations. Pam Dixon, executive director of the WPF, stated in the comments that the SEC's new regulations would "Place on the public record and online the largest amount of personal financial information about borrowers ever disclosed, including information never before made public." The comments also note that the SEC's plan greatly increases the risk of identity theft for individual borrowers whose information will be released publicly.

Public Comments: May 2010 - WPF comments on possible changes to HIPAA privacy rule; requests more patient access to audit logs

The World Privacy Forum filed comments with the US Department of Health and Human Services today in response to its Request for Information about possible changes to the HIPAA health privacy rule. WPF strongly supported patients' current right to request a history of disclosures of their medical files, and requested an expansion of this right. WPF noted in its comments to HHS that "An individual cannot fully protect his/her privacy interest in a health record (and most other records) unless he/she has a right of access to the record, the right to propose a correction, and the right to see who has used the record and to whom it has been disclosed. Each of these elements is essential."

WPF comments on proposed changes to HIPAA

Health privacy and HIPAA -- The World Privacy Forum filed comments with the US Department of Health and Human Services today in response to its Request for Information about possible changes to the HIPAA health privacy rule. WPF strongly supported patients' current right to request a history of disclosures of their medical files, and requested an expansion of this right. WPF noted in its comments to HHS that "An individual cannot fully protect his/her privacy interest in a health record (and most other records) unless he/she has a right of access to the record, the right to propose a correction, and the right to see who has used the record and to whom it has been disclosed. Each of these elements is essential."

Public Comments: January 2010 - WPF files comments with Department of Labor regarding genetic regulations

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.

Public Comments: December 2009 - Genetic Information Nondiscrimination Act of 2008, GINA NPRM

The World Privacy Forum filed comments on proposed regulations for implementing Title I of GINA, the Genetic Non-Discrimination Act. The WPF requested a change to the proposed regulations, asking the Department of Health and Human Services require immediate posting of revised notices of privacy practices on the web sites of affected health plans. Under the proposed regulations, written notice of revised privacy practices to individuals could be delayed due to the cost of postal mailing. The WPF noted that a revised privacy notice posted on a health plan's web site would not incur postal costs, and that regulated entities should take this minimum step to inform consumers of any changes regarding privacy practices affecting genetic non-discrimination.

World Privacy Forum comments on genetic non-discrimination to HHS

Genetic non-discrimination regulations (GINA) -- The World Privacy Forum filed comments on proposed regulations for implementing Title I of GINA, the Genetic Non-Discrimination Act. The WPF requested a change to the proposed regulations, asking the Department of Health and Human Services require immediate posting of revised notices of privacy practices on the web sites of affected health plans. Under the proposed regulations, written notice of revised privacy practices to individuals could be delayed due to the cost of postal mailing. The WPF noted that a revised privacy notice posted on a health plan's web site would not incur postal costs, and that regulated entities should take this minimum step to inform consumers of any changes regarding privacy practices affecting genetic non-discrimination.

Testimony: The Modern Permanent Record and Consumer Impacts from the Offline and Online Collection of Consumer Information

I am particularly interested in developments related to online and offline data flows of consumer information. Given the advances in technology that have significantly broadened and deepened the scope of consumer data collection practices, and given the new ways that these technologies and practices can shape and impact an individual’s experiences and opportunities, I believe the decisions that this Committee arrives at will be of lasting importance. Given the transition our society is undergoing from analog to digital, it is crucial to question what changes the new environment brings, what new controls it includes, and its meaning for our day-to-day lives. It is especially crucial to carefully examine and to discuss the effects these developments will have for the consumer. We must look for a fair balance between benefit, risk, and harm.

WPF files comments for FTC Roundtables on privacy standards, consumer expectations of privacy

FTC Privacy Roundtable -- The World Privacy Forum filed comments last week for the FTC Privacy Roundtables, the first of which will be held December 7, 2009. The WPF comments urged the FTC to consider the Fair Credit Reporting Act as a key privacy model to apply to additional areas, to use the full version of Fair Information Practices, and discussed how a rights-based framework was the key to advancing consumers' interests. The comments discussed list brokers at length, and explained how even the most informationally cautious consumer will land on numerous marketing lists and databases. The WPF comments noted that not all marketing lists are used to target ads to consumers; some lists and databases are used to deny consumers goods and services. The comments contain a detailed section on privacy frameworks, a section on direct marketing, and an appendix with supporting information.

Public Comments: November 2009 - WPF files comments for FTC Roundtables on privacy standards, consumer expectations of privacy

The World Privacy Forum filed comments last week for the FTC Privacy Roundtables, the first of which will be held December 7, 2009. The WPF comments urged the FTC to consider the Fair Credit Reporting Act as a key privacy model to apply to additional areas, to use the full version of Fair Information Practices, and discussed how a rights-based framework was the key to advancing consumers' interests. The comments discussed list brokers at length, and explained how even the most informationally cautious consumer will land on numerous marketing lists and databases. The WPF comments noted that not all marketing lists are used to target ads to consumers; some lists and databases are used to deny consumers goods and services. The comments contain a detailed section on privacy frameworks, a section on direct marketing, and an appendix with supporting information.

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.

Public Comments: October 2009 - WPF files comments with HHS requesting changes

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.

WPF asks Treasury to get consumers' consent before checking their credit reports

Financial privacy - Privacy Act -- The World Privacy Forum filed comments today urging the U.S. Treasury Department to obtain consumers' consent before checking their credit reports. Consumers who participate in the government's Home Affordable Modification Program (HAMP) -- an Obama administration program created to help consumers renegotiate their mortgages so they can keep their homes -- must allow the Federal Government to check their credit reports without first obtaining consent. This procedure sets a negative precedent, and is at odds with consumer expectations of privacy. The Treasury gave itself this power in an obscure set of "Routine Uses" in a Privacy Act notice published along with the proposed system of records for the program. The World Privacy Forum has objected to this, and has filed detailed comments with the Treasury about the lack of consumer consent. The public comment period on this program is open until September 4, 2009.

Public Comments: August 2009 - WPF asks Treasury to get consumers' consent before checking their credit reports

The World Privacy Forum filed comments today urging the U.S. Treasury Department to obtain consumers' consent before checking their credit reports. Consumers who participate in the government's Home Affordable Modification Program (HAMP) -- an Obama administration program created to help consumers renegotiate their mortgages so they can keep their homes -- must allow the Federal Government to check their credit reports without first obtaining consent. This procedure sets a negative precedent, and is at odds with consumer expectations of privacy. The Treasury gave itself this power in an obscure set of "Routine Uses" in a Privacy Act notice published along with the proposed system of records for the program. The World Privacy Forum has objected to this, and has filed detailed comments with the Treasury about the lack of consumer consent. The public comment period on this program is open until September 4, 2009.

Public Comments: August 2009 - WPF files comments on government use of web tracking technologies

The World Privacy Forum filed comments with the Office of Management and Budget regarding its proposal to begin to allow the use of tracking cookies on government web sites. The proposal was published in the Federal Register, and outlined a three-tiered plan for how web tracking technologies might be used. The Forum's comments focused on methods of opt-out, data retention, secondary use, user authentication, new tracking technologies such as Flash cookies, and the need for new opt-out mechanisms. The Forum also urged the federal government to not allow third party tracking of consumers' use of government web sites, and to guard against any discrimination against consumers who do not want to be tracked.

World Privacy Forum files comments on government use of web tracking technologies

Online privacy and government web sites -- The World Privacy Forum filed comments with the Office of Management and Budget regarding its proposal to begin to allow the use of tracking cookies on government web sites. The proposal was published in the Federal Register, and outlined a three-tiered plan for how web tracking technologies might be used. The Forum's comments focused on methods of opt-out, data retention, secondary use, user authentication, new tracking technologies such as Flash cookies, and the need for new opt-out mechanisms. The Forum also urged the federal government to not allow third party tracking of consumers' use of government web sites, and to guard against any discrimination against consumers who do not want to be tracked.

World Privacy Forum files comments with HHS regarding data breach guidance

Public comments re: health data breaches -- The World Privacy Forum filed comments with the Department of Health and Human Services today regarding the HITECH Act guidance that HHS published along with a request for comments. The Forum urged the Department to tighten its proposed guidance, and to add more protections, oversight, and rules for "limited data set" breaches.