Kadija Ferryman: Achieving Fairness in Precision Medicine (Ep. 135)

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Kadija Ferryman: Achieving Fairness in Precision Medicine (Ep. 135)

Data & Society’s Kadija Ferryman joined Joe Miller to discuss data-driven medicine and the policy issues surrounding fairness in precision medicine.

Bio

Dr. Kadija Ferryman (@KadijaFerryman) is a Postdoctoral Scholar at the Data and Society Research Institute in New York. Dr. Ferryman is a cultural anthropologist whose research examines how cultural and moral values are embedded in digital health information, social and biological influences on health, and the ethics of translational and digital health research. She earned a BA in Anthropology from Yale University and a PhD in Anthropology from The New School for Social Research. Before completing her PhD, she was a policy researcher at the Urban Institute where she studied how housing and neighborhoods impact well-being, specifically the effects of public housing redevelopment on children, families, and older adults. She has published research in journals such as Journal of Health Care for the Poor and Underserved, European Journal of Human Genetics, and Genetics in Medicine.

Resources

What is Precision Medicine by Kadija Ferryman and Mikaela Pitcan (Data & Society, 2018)

Fairness in Precision Medicine by Kadija Ferryman and Mikaela Pitcan (Data & Society, 2018)

Fact Sheet: Obama Administration Announces Key Actions to Accelerate Precision Medicine Initiative (archived)

Are Workarounds Ethical?: Managing Moral Problems in Health Care Systems by Nancy Berlinger (Oxford University Press, 2016)

 

News Roundup

Facebook still under fire amidst looming GDPR implementation

The EU’s Global Data Protection Regulation (GDPR) is set to take effect on May 26th and Facebook is scrambling to manage a ceaseless onslaught of negative press regarding how it handles its users’ data. Ryan Browne at CNBC reports on the dangers of Facebook’s “log in with Facebook” feature, which apparently exposes users’ data to third-party trackers.

Morgan Chalfant at the New York Times reported on a painting app that actually installs malware that harvests users’ payment information, among other things.

Additionally, Ali Breland reports in the Hill that the Department of Housing and Urban Development has reopened an investigation it had closed last year into whether and how Facebook helps facilitate housing discrimination.

Democrats are pushing for tighter data protection rules at the Federal Trade Commission, but that’s unlikely to mean much in the near-term since, with Commissioner Terrell McSweeny’s announcement last week that she’ll be stepping down at the end of this month, the FTC will now be operating with just one of five commissioners—Republican Acting Chair Maureen Ohlhausen. Auditors don’t seem to be offering much in the way of confidence in the manner with which Facebook protects user data. PricewaterhouseCoopers conducted an audit of Facebook and told the FTC, after Facebook knew about Cambridge Analytica, that Facebook was adequately protecting consumer privacy and in compliance with a 2011 consent decree.

Meanwhile, David Ingram reports for Reuters that Facebook has changed its terms of service for 1.5 billion Facebook users in Africa, Asia, Australia and Latin America. Like Europe, their terms of service were governed by Facebook’s headquarters in Ireland. But since Ireland would come under GDPR, Facebook has changed the terms of service in those areas to fall under the more lenient U.S. privacy standards. Facebook says it will apply the same privacy standards around the world.

Clyburn to step down from FCC

Democratic FCC Commissioner Mignon Clyburn has announced that she will be stepping down from the dais at the end of the month. The Obama appointee served at the Commission for eight years and was a rare and passionate advocate for marginalized communities. President Trump will need to nominate a replacement Commissioner who would then need to be confirmed by the Senate. Senate Minority Leader Chuck Schumer is reportedly set to recommend current FCC Assistant Enforcement Bureau Chief Geoffrey Starks, who enjoys broad support from Democrats.

U.S. investigates AT&T/Verizon collusion

Cecilia Kang reports for the New York Times that the DOJ has launched an antitrust investigation into possible coordinated efforts between AT&T and Verizon and the G.S.M.A.— the standards-setting group, to make it more difficult for consumers to switch carriers.  The Justice Department is looking into whether the organizations intentionally attempted to stifle the development of eSIM which allows consumers to switch provides without a new SIM card.

FCC to hold 5G spectrum auctions in November

The Federal Communications Commission voted unanimously last week on a public notice that it will commence spectrum auctions for 5G in the 28- and 24- GHz bands. The auctions will commence on November 14th, beginning with the 28 GHz band.

CNN report: YouTube ran ads for hundreds of brands on extremist YouTube channels

A CNN report found that ads from over 300 companies appeared on YouTube channels promoting extremist groups like Neo-Nazis, conspiracy theorists and other extremist content. Adidas, Cisco, Hershey, Hilton and Under Armour were among the many companies whose ads appeared on these sites. Paul Murphy reports in CNN.

Lyft to invest to offset carbon emissions

Finally, Heather Somerville at Reuters reported that Lyft is launching a program to offset emissions from their 1.4 million drivers. The company will invest in things like renewable energy and reforestation to make up for its emissions, and the amount it invests will grow with the company.