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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

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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

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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

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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. 

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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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Publication

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Cover of Minnesota Medicine, June 2015

Susan M. Wolf Article in Minnesota Medicine Privacy Issue

June 29, 2015

The June 2015 issue of Minnesota Medicine, the official publication of the Minnesota Medical Association, features a piece on "The New World of Genetic Test, Families and Privacy" by Consortium founding chair Susan M. Wolf. The article reviews case law dating back to the 1990s about a physician's "duty to warn" and shares insights about medical information-sharing by physicians gained from original research led by the Consortium. Since 2005, we've collaborated with scholars across the country on a series of National Institutes of Health (NIH)-funded projects analyzing the issues involved in the return of genomic results and incidental findings to research participants. The resulting publications have had a major impact on the national debate.

 

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Consortium Annual Conference on the Front Page!

November 7, 2014

An article in today's Minneapolis Star Tribune describes the Consortium's annual conference, held on Nov. 6, 2014. The article, "Experts wrangle with the ethics of genome research," includes comments by Susan M. Wolf, JD, and others, and illustrates the kinds of research being conducted by conference presenters. This year's conference grew out of a multi-year National Institutes of Health grant, Disclosing Genomic Incidental Findings in a Cancer Biobank: An ELSI Experiment; results will be published in the Journal of Law, Medicine and Ethics in fall, 2015.

Research

DNA strands

Disclosing Genomic Incidental Findings in a Cancer Biobank: An ELSI Experiment

This empirical and normative bioethics research project will guide policy and practice about the disclosure of genomic incidental findings (GIFD), a much-debated topic. With ethical guidance from a multidisciplinary ELSI Working Group, we will conduct an experiment designed to develop strategies for offering incidental findings to family members of probands in a biobank for pancreatic cancer. Our approach will be informed by studying the preferences of biobank research participants (including kin).