Search Results - "Evans, Barbara J"

A survey of U.S. public perspectives on facial recognition technology and facial imaging data practices in health and research contexts by Katsanis, Sara H, Claes, Peter, Doerr, Megan, Cook-Deegan, Robert, Tenenbaum, Jessica D, Evans, Barbara J, Lee, Myoung Keun, Anderton, Joel, Weinberg, Seth M, Wagner, Jennifer K

“…Facial imaging and facial recognition technologies, now common in our daily lives, also are increasingly incorporated into health care processes, enabling…”
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HIPAA’s Individual Right of Access to Genomic Data: Reconciling Safety and Civil Rights by Evans, Barbara J.

“…In 2014, the United States granted individuals a right of access to their own laboratory test results, including genomic data. Many observers feel that this…”
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Barbarians at the Gate: Consumer-Driven Health Data Commons and the Transformation of Citizen Science by Evans, Barbara J.

“…“The expression ‘barbarians at the gate’ was … used by the Romans to describe foreign attacks against their empire.”1 “[It] is often used in contemporary…”
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The FDA and Genomic Tests — Getting Regulation Right by Evans, Barbara J, Burke, Wylie, Jarvik, Gail P

“…The authors review the nature of the proposal by the FDA for the regulation of next-generation sequencing and laboratory-developed tests in clinical medicine…”
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Response to Dreyfus and Sobel by Evans, Barbara J

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The Perils of Parity: Should Citizen Science and Traditional Research Follow the Same Ethical and Privacy Principles? by Evans, Barbara J.

“…The individual right of access to one’s own data is a crucial privacy protection long recognized in U.S. federal privacy laws. Mobile health devices and…”
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Return of results and data to study participants by Wolf, Susan M, Evans, Barbara J

“…A recent report urges progress but builds barriers to research participants' access Researchers conducting imaging, environmental health, and genetics studies…”
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The Streetlight Effect: Regulating Genomics Where the Light Is by Evans, Barbara J.

“…Regulatory policy for genomic testing may be subject to biases that favor reliance on existing regulatory frameworks even when those frameworks carry…”
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Return of results: Ethical and legal distinctions between research and clinical care by Burke, Wylie, Evans, Barbara J, Jarvik, Gail P

“…The return of individual results to research participants has been vigorously debated. Consensus statements indicate that researchers and bioethicists consider…”
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Minimizing liability risks under the ACMG recommendations for reporting incidental findings in clinical exome and genome sequencing by Evans, Barbara J.

“…Recent recommendations by the American College of Medical Genetics and Genomics (ACMG) for reporting incidental findings present novel ethical and legal…”
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The law of genetic privacy: applications, implications, and limitations by Clayton, Ellen Wright, Evans, Barbara J, Hazel, James W, Rothstein, Mark A

“…Recent advances in technology have significantly improved the accuracy of genetic testing and analysis, and substantially reduced its cost, resulting in a…”
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Rules for robots, and why medical AI breaks them by Evans, Barbara J

“…This article critiques the quest to state general rules to protect human rights against AI/ML computational tools. The White House Blueprint for an AI Bill of…”
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Defending the return of results and data by Wolf, Susan M, Evans, Barbara J

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Mining the human genome after Association for Molecular Pathology v. Myriad Genetics by Evans, Barbara J

“…The Supreme Court’s recent decision in Association for Molecular Pathology v. Myriad Genetics portrays the human genome as a product of nature. This frames…”
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Who Owns the Data in a Medical Information Commons? by McGuire, Amy L., Roberts, Jessica, Aas, Sean, Evans, Barbara J.

“…In this paper, we explore the perspectives of expert stakeholders about who owns data in a medical information commons (MIC) and what rights and interests…”
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People-powered data collaboratives: fueling data science with the health-related experiences of individuals by Evans, Barbara J, Krumholz, Harlan M

“…Abstract The creation of people-driven data collaboratives, with governance structures that enable participants to have a meaningful voice in issues…”
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The dilemma of consent for AI in healthcare by Balch, Jeremy A., Evans, Barbara J., Shickel, Benjamin, Bihorac, Azra, Upchurch, Gilbert R., Loftus, Tyler J.

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Impact of HIPAA’s minimum necessary standard on genomic data sharing by Evans, Barbara J, Jarvik, Gail P

“…This article provides a brief introduction to the Health Insurance Portability and Accountability Act of 1996 (HIPAA) Privacy Rule’s minimum necessary…”
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To do no harm — and the most good — with AI in health care by Goldberg, Carey Beth, Adams, Laura, Blumenthal, David, Brennan, Patricia Flatley, Brown, Noah, Butte, Atul J., Cheatham, Morgan, deBronkart, Dave, Dixon, Jennifer, Drazen, Jeffrey, Evans, Barbara J., Hoffman, Sara M., Holmes, Chris, Lee, Peter, Manrai, Arjun Kumar, Omenn, Gilbert S., Perlin, Jonathan B., Ramoni, Rachel, Sapiro, Guillermo, Sarkar, Rupa, Sood, Harpreet, Vayena, Effy, Kohane, Isaac S.

“…Drawing from real-life scenarios and insights shared at the RAISE (Responsible AI for Social and Ethical Healthcare) conference, we highlight the critical need…”
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Does the law require reinterpretation and return of revised genomic results? by Clayton, Ellen Wright, Appelbaum, Paul S., Chung, Wendy K., Marchant, Gary E., Roberts, Jessica L., Evans, Barbara J.

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