Hot Topics: Privacy

Blog Posts (56)

December 5, 2018

Ethical Guidelines for DNA testing in Migrant Family Reunification

This blog post will appear in a future issue of the American Journal of Bioethics

by Nita Farahany, JD, PhD; Saheel Chodavadia; and Sara H.

October 26, 2018

BioethicsTV (October 22-26): #TheResident, #NewAmsterdam, #ChicagoMed

by Craig Klugman, Ph.D.

“Exploring ethical issues in TV medical dramas”

Jump to The Resident (Season 2; Episode 5): Buying Thought Leaders and Handsy Docs; Jump to New Amsterdam (Season 1; Episode 5): Gun shootings; Jump to Chicago Med (Season 4; Episode 5): Genetic secrets and duty to inform

Resident (Season 2; Episode 5): Buying Thought Leaders and Handsy Docs

Bell negotiates a deal with a new start-up medical device company: For a substantial discount, he will make the company the sole source of medical devices at the hospital.…

September 27, 2018

Investigative Genealogy: Guilty by Familial Association

by Craig Klugman, Ph.D.

This week I was on a panel discussing the topic of genealogical searchingrunning a DNA sample found at a crime scene against criminal, public and commercial DNA databases with the goal of not finding a suspect, but to find a relative of the suspect.…

July 9, 2018

Social Media, Privacy, and Research: A Muddled Landscape

The advent of social media technology has opened many new avenues of research in population health, demographics, psychology, and the social sciences. It is crucial to consider whether researchers conducting observational research using social media need to obtain consent from their research subjects, and whether the current research regulations in the United States establish effective,… Read more

The post Social Media, Privacy, and Research: A Muddled Landscape appeared first on The Hastings Center.

July 5, 2018

BioethicsTV (June 27-July 4): #CodeBlack

Code Black (Season 3; Episode 10): Patients Asking Doctors to Lie to Family Members; Code Black (Season 3; Episode 11): Law enforcement pressuring nurse for blood draw

by Craig Klugman, Ph.D.

June 27, 2018

Who gets to tell our stories?: Health narratives and privilege

by Keisha Ray, Ph.D.

“Nothing about us without us.”– J.I. Charlton, adopted by disability rights advocates

Recently I sat in a room of scholars who teach health humanities in medical schools and undergraduate institutions across the United States and Canada.…

June 15, 2018

Do You Want the Police Snooping in Your DNA?

In late April, a suspect thought to be the Golden State Killer, a man who had eluded police for decades after committing a string of murders and rapes in Northern California and Orange County between 1976 and 1986, was identified on the basis of DNA evidence. Although we celebrate the dogged pursuit of a more… Read more

The post Do You Want the Police Snooping in Your DNA? appeared first on The Hastings Center.

May 31, 2018

Targeted Medicine: Advertising to the Medically Vulnerable

by Craig Klugman, Ph.D.

Imaging going to the doctor and suddenly finding ads popping up on your phone. Perhaps there’s a discount for receiving a specialized treatment.…

May 17, 2018

Big Data Studies and Abuse of Fiduciary Duties

by Craig Klugman, Ph.D.

A study published in the May 17th, 2018 issue of Cell, “Disease Heritability Inferred from Familial Relationships Reported in Medical Records,” shows a connection between families and certain diseases at three large urban university medical centers.…

May 11, 2018

BioethicsTV (May 7-11): #ChicagoMed, #GreysAnatomy

by Craig Klugman, Ph.D.

Chicago Med (Season 3; Episode 19): Maternal-Fetal Conflict; Grey’s Anatomy (Season 14; Episode 23): Personal Disclosures of Illness

As the traditional television season comes to a close, many medical dramas have steered away from ethical dilemmas in medical care to heighten the drama among their characters in order to provide strong cliff hangers for the season finale.

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Published Articles (9)

American Journal of Bioethics: Volume 18 Issue 2 - Feb 2018

The Quantified Relationship John Danaher, Sven Nyholm & Brian D. Earp

AJOB Primary Research: Volume 8 Issue 2 - Apr 2017

When bins blur: Patient perspectives on categories of results from clinical whole genome sequencing Leila Jamal, Jill O. Robinson, Kurt D. Christensen, Jennifer Blumenthal-Barby, Melody J. Slashinski, Denise Lautenbach Perry, Jason L. Vassy, Julia Wycliff, Robert C. Green & Amy L. McGuire

American Journal of Bioethics: Volume 17 Issue 5 - May 2017

Ethical Issues in Fecal Microbiota Transplantation in Practice Yonghui Ma, Jiayu Liu, Catherine Rhodes, Yongzhan Nie & Faming Zhang

American Journal of Bioethics: Volume 17 Issue 5 - May 2017

Ethics, Refugees, and the President's Executive Order Nancy E. Kass

American Journal of Bioethics: Volume 17 Issue 5 - May 2017

Genetic Fingerprints and National Security Beau P. Sperry, Megan Allyse & Richard R. Sharp

American Journal of Bioethics: Volume 17 Issue 1 - Jan 2017

Tracking U.S. Professional Athletes: The Ethics of Biometric Technologies Katrina Karkazis & Jennifer R. Fishman

American Journal of Bioethics: Volume 15 Issue 11 - Nov 2015

Ingestible Drug Adherence Monitors: Trending Toward a Surveillance Society? Richard R. Sharp

American Journal of Bioethics: Volume 14 Issue 10 - Oct 2014

Case Study:The Obligations to Report Statutory Sexual Abuse Disclosed in a Research Study Holly A. Taylor, Ellen Kuwana & Benjamin S. Wilfond

American Journal of Bioethics: Volume 13 Issue 10 - Oct 2013

Why Misconduct Trumps Patient–Therapist Confidentiality and Ways to Avoid the Disclosure Dilemma Nicholas H. Steneck

News (199)

December 1, 2018 9:00 am

This high school was rocked by an HIV scare 10 years ago (The Washington Post)

Ten years ago, Jennifer Wyms was a 17-year-old junior at Normandy High School in Wellston, Mo. She was the captain of her school’s hip-hop dance team and enjoyed going to the mall with friends. But when a health scare engulfed her St. Louis community, it cast a shadow on her high school experience.

A letter from school officials sent to parents and guardians in October 2008 relayed the news that epidemiologists with the St. Louis County Department of Health had grounds to believe that HIV may have been transmitted among some students — as many as 50 students at Normandy High School could have been exposed, it said.

“Everybody wanted to know, who had it? Where it came from? Why our school?” Wyms told The Washington Post.

November 29, 2018 9:15 am

Who owns your medical data? Most likely not you. (The Washington Post)

Do you think you own your own medical data? Your hospital and doctor records, lab and radiology tests, genetic information, even the actual tissue removed during a biopsy or other surgical procedure? Well, you don’t.

It’s a good bet that the fine print of the consent form you signed before your latest test or operation said that all the data or tissue samples belong to the doctor or institution performing it. They can study it, sell it or do whatever they want with it, without notifying or compensating you, although the data must be depersonalized in their best effort to make sure you are anonymous.

November 12, 2018 9:00 am

A systematic literature review of individuals’ perspectives on privacy and genetic information in the United States (PLOS)

The picture of genetic privacy that emerges from this systematic literature review is complex and riddled with gaps. When asked specifically “are you worried about genetic privacy,” the general public, patients, and professionals frequently said yes. In many cases, however, that question was posed poorly or only in the most general terms. While many participants expressed concern that genomic and medical information would be revealed to others, respondents frequently seemed to conflate privacy, confidentiality, control, and security. People varied widely in how much control they wanted over the use of data.

November 9, 2018 1:00 pm

23andMe’s genetic test for how you’ll react to medication is ahead of its time (The Verge)

The doctor still isn’t supposed to suggest changing medication until they have you genetically tested again by an independent lab. “It seems to me that if a patient has an interest in their pharmacogenetic profile that could impact medication decisions, they’re probably better off just asking the physician about what testing can be done

November 5, 2018 9:00 am

Apple Heart Study not used to gain FDA clearance for Apple Watch Series 4 ECG (Apple Insider)

The Apple Heart Study, conducted in partnership with Stanford Medicine, collected heart rate data from more than 400,000 Apple Watch users in its attempt to determine whether wearable devices can effectively detect irregular heart rhythms. Contrary to previous reports, however, the results were not used to gain clearance from the U.S. Food and Drug Administration for Apple Watch Series 4’s ECG feature.

October 24, 2018 9:00 am

The Results of Your Genetic Test Are Reassuring. But That Can Change. (The New York Times)

Laboratories frequently “reclassify” genetic mutations. But there is no reliable system for telling patients or doctors that the results of their genetic tests are no longer valid.

October 23, 2018 9:00 am

Why White Supremacists Are Chugging Milk (and Why Geneticists Are Alarmed) (The New York Times)

Worry about how new tools are allowing us to home in on the genetic basis of hot-button traits like intelligence will be misconstrued to fit racist ideologies.

October 22, 2018 9:00 am

Elizabeth Warren and the Folly of Genetic Ancestry Tests (The New York Times)

Identity is socially, politically and legally determined, even if shaped by genetics. Yet, genetic ancestry testing does not offer insights about these dynamics. So we can’t look to DNA to settle debates about identity.

October 20, 2018 9:00 am

The culprit’s name remains unknown. But he licked a stamp, and now his DNA stands indicted. (The Washington Post)

There was just enough spit on the back of the 9-cent stamp to piece together the identity of the person who licked it. Everything except for his name.

August 3, 2018 6:35 am

Ancestry, 23andMe and others say they will follow these rules when giving DNA data to businesses or police (The Washington Post)

Ancestry, 23andMe and other popular companies that offer genetic testing pledged on Tuesday to be upfront when they share users’ DNA data with researchers, hand it over to police or transfer it to other companies, a move aimed at addressing consumers’ mounting privacy concerns. Under the new guidelines, the companies said they would obtain consumers’ “separate express consent” before turning over their individual genetic information to businesses and other third parties, including insurers.

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