Privacy

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News

Graphic from ProPublica story -- cartoon of personal file

Health Insurers Using Personal Data to Profile Patients

August 1, 2018

The perils of the Big Data era seem to increase every day. The most recent area under scrutiny is the use of personal data by health insurers to track "race, education level, TV habits, marital status, net worth. . . what you post on social media, whether you're behind on your bills, [and] what you order online," according to a new investigative report by ProPublica and NPR. The article notes, "At a time when every week brings a new privacy scandal and worries abound about the misuse of personal information, patient advocates and privacy scholars say the insurance industry’s data gathering runs counter to its touted, and federally required, allegiance to patients’ medical privacy. The Health Insurance Portability and Accountability Act, or HIPAA, only protects medical information." Patient advocates are concerned data will be used to set insurance rates and can lead to false assumptions about health-related habits, even though it may be factually incorrect. Prof. William McGeveran of the University of Minnesota Law School, contrasts the robust marketplace for personal data in the US to Europe, where "data protection is a constitutional right." McGeveran is a member of the working group for the Consortium's LawSeqSM project. 

News

Why is DTC Genetic Testing Booming Despite a Lack of Privacy Protections?

June 21, 2018

An article published in Slate as part of their Future Tense project provides a valuable overview of the current state of privacy protections for those who use direct-to-consumer (DTC) genetic tests: "There’s a basic asymmetry at work in genetic testing: It takes just a few minutes to put some spit into a vial, sign a few disclosure forms, and pop your saliva in the mail. But that little bit of spit can yield volumes of deeply intimate data about your body. As Undark Magazine has reported in the past, that information can last for decades. It can be subpoenaed in court. It can be stolen. And it can be bundled and sold as a commodity. . . . Unlike genetic data collected in a hospital, the information that direct-to-consumer tests gather about you is not subject to the Health Insurance Portability and Accountability Act, or HIPAA, which places restrictions on how health care providers can share information about patients. State laws offer some regulations, but they vary widely from state to state." DTC genetic tests are among the topics being studied as part of the LawSeqSM project, for which Consortium chair Susan M. Wolf is one of the PIs; Barbara J. Evans (University of Houston Law Center), a member of the LawSeqSM working group, is quoted in the article. Learn more about the project here.

News

DNA graphic with doctors in the middle

Fine Print in DNA Kits May Hold Some Surprises

May 25, 2017

A report from the NBC affiliate in Boston sheds light on an aspect of mail-in DNA kits that may surprise some users: when you sign the paperwork to obtain the results, you're often granting a "perpetual, royalty-free, world-wide, transferable license" for the data. The company in this example is Ancestry, but in an interview Glenn Cohen of Harvard Law School's Petrie-Flom Center noted "that kind of language is probably buried into the informed consent or the forms you sign almost every time you've donated blood or had a blood test." In a statement, Ancestry said they will "not share DNA data with third party marketers, employers or insurance companies," and they allow users to delete their DNA results and/or ask the company destroy the sample from which the results were derived. They also store your DNA without your name. However, these policies are not included in the contract users of Ancestry DNA are required to sign. Consumer protection attorney Joel Winston is quoted in Slate saying “Even if you’ve never used Ancestry.com, but one of your genetic relatives has, the company may already own identifiable portions of your DNA.” Issues related to shared family genomics and privacy have been explored by Consortium Chair Susan M. Wolf and her co-investigators, resulting in a major symposium on the subject. 

News

Logo for Open SNP web platform

New Research Explores Public Genomic Data Sharing

May 10, 2017

A new paper just published in PLOS ONE examines the motivations and characteristics of people who openly share the results of direct-to-consumer genetic testing using the web platform OpenSNP. The team of authors, who are affiliated with the University of Zurich, University of Cambridge, and Goethe University in Frankfurt, found those who shared their data were motivated by a desire to learn more about themselves; to advance medical research and improve genetic testing; and because they considered it fun. The researchers noted "Whereas most respondents were well aware of the privacy risks of their involvement in open genetic data sharing and considered the possibility of direct, personal repercussions troubling, they estimated the risk of this happening to be negligible." Among the paper's authors was Effy Vayena, who spoke at the Consortium's recent conference on research ethics. You can see her talk here.

News

National Football League logo

The Ethics of Football: NFL Player Health Policies Examined

February 1, 2017

Just in time for next Sunday's Superbowl game, a new paper published in the University of Pennsylvania Law Review explores the legal and ethical aspects of a hypothetical National Football League (NFL) player's health. The authors, who include Consortium collaborator I. Glenn Cohen of Harvard Law School, ask "What are the current legal standards for employers collecting and acting on an individual’s health- and performance-related information?" They draw upon disability law, privacy law and other disciplines to provide recommendations to better protect the health and privacy of professional football players. The authors find that "it appears that some of the existing evaluations of players, both at the NFL Scouting Combine (Combine) and once drafted and playing for a club, seem to violate existing federal employment discrimination laws." To correct this, they recommend both adherence to current laws and changes to existing statutory schemes. Read the entire article here

News

DNA helix plus family genomic map

Genomic Research Privacy Recommendations in the News

May 18, 2016

An article in the Huffington Post by Robert C. Green, MD, MPH (Harvard, Brigham and Women's Hospital) outlines the conclusions reached by a team of researchers led by Consortium chair Susan M. Wolf, JD; Gloria Petersen, PhD (Mayo) and Barbara Koenig, PhD, RN (UCSF). Their charge: to make recommendations regarding the disclosure of genomic incidental findings to family members of research participants. The national working group for the project included Green and other eminent scholars. Thus far, the study has produced consensus recommendations; a published symposium; and a public conference

News

Prof. Don Postema

"Ethics, the Electronic Health Record, and Karl Marx"

March 14, 2016

On Friday, March 11, Don Postema, PhD described how Karl Marx can help us understand the alienation providers experience when working with electronic health records (EHRs). While EHRs are intended to improve the efficiency and safety of health care practices, they have raised concerns about confidentiality issues related to data theft and the computer’s intrusion into the clinician-patient relationship. Dr. Postema, HealthPartner's Program Director of Medical Ethics, discussed these challenges and asked, "can the EHR be humanized?" His lecture was sponsored by Consortium member the Center for Bioethics; more information here

News

First Consensus Recommendations Published on Sharing Individuals’ Genomic Findings with Family

October 19, 2015

An NIH-funded, blue-ribbon project group has just published the first consensus recommendations on a question that has vexed researchers for serveral years: Should researchers share an individual study participant’s private results with family members who may share a genetic risk? A new special issue of the Journal of Law, Medicine & Ethics grapples with these real-world dilemmas and presents recommendations to guide researchers confronted with them. The symposium is an outgrowth of a multi-year National Institutes of Health (NIH)-funded grant and was edited by the grant's principal investigators: Susan M. Wolf, JD, University of Minnesota; Barbara A. Koenig, PhD, RN, University of California, San Francisco; and Gloria M. Petersen, PhD, Mayo Clinic College of Medicine. Prof. Wolf says, “What makes these issues so challenging is current bioethics, law, and research rules focus on protecting individuals, but genetics is about families.” The guidelines are the beginning of an important, national policy conversation, one that will have a major impact on the future of genomics in U.S. health care. View a PDF of the consensus recommendations here. 

News

Wall Street Journal logo

WSJ Profiles One Family's DNA Sequencing Privacy Challenges

September 28, 2015

An article in today's Wall Street Journal describes one family's struggles regarding how much DNA information to share with each other. Identical twins Kathy Giusti and Karen Andrews have been diagnosed with two different types of cancer and hold divergent opinions, leading to tough questions about how much each family member wanted to share, wanted to know, and the privacy issues and sense of obligation the situation evokes. In the piece, Consortium chair Susan M. Wolf, JD, notes, “Most of our law and ethics is about single individuals, their rights, their protection, their autonomy. But genetics is not about that. Genetics is about families.” Also in the article, Bonnie LeRoy, Director of the University of Minnesota's Graduate Program in Genetic Counseling, describes how she helps families wrestle with these decisions. Family genomics and privacy is the subject of an NIH-funded grant co-led by Susan Wolf, Gloria M. Peterson, PhD of the Mayo Clinic, and Barbara Koenig, PhD, of the University of California, San Francisco. 

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