Hot Topics: Privacy

Blog Posts (54)

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.

May 2, 2018

From Westworld to the Rest of the World: Time to Regulate the Mining of Third Party Data

by Craig Klugman, Ph.D.

You do not have control over your ideas, your passions, or even your DNA anymore. Your biological material and your ideas may be taken without your awareness of it.…

April 27, 2018

BioethicsTV (April 23-27): #TheResident, #ChicagoMed, #CodeBlack

by Craig Klugman, Ph.D.

The Resident (Season 1; Episode 11): Placebos, CYA, Office politics; Chicago Med (Season 3; Episode 17): Promise-making, Denial Brain death (PVS or coma); Code Black (Seasons 3; Episode 1): Do no harm, HIPAA

The Resident (Season 1; Episode 11): Placebos; CYA; Office politics

We learn that the hospital’s motto is “Incredible things are happening here.” That’s ironic because the incredible clearly isn’t meant to be seen in a positive light.…

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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 (190)

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.

July 19, 2018 12:29 pm

Arizona law would give frozen embryos to spouse who wants baby after divorce (CBS News)

A controversial new Arizona law that took effect July 1 would give Torres access to the embryos. The law requires courts to give embryos to the spouse who plans to use them to have a baby when a couple decides to have a divorce. Supporters of the law say it will protect a partner’s right to his or her embryos. Opponents say it could force people to become parents against their will.

July 10, 2018 3:00 am

Iceland's ethical debate: Should DNA donors be told if they are predisposed to a deadly disease? (CBC Radio)

If you knew someone was genetically predisposed to cancer, would you tell them? Dr. Kari Stefansson would. The Icelandic neurologist is the CEO of deCODE Genetics, a company that has collected the DNA of nearly half the country’s population. Using the company’s data, he said that he can pinpoint 1,600 people at risk of deadly cancers in Iceland. The government, however, won’t let him.

July 5, 2018 9:00 am

Massive data leak could affect nearly all American adults, security researcher says (Mercury News)

Exactis, a Florida-based marketing and data-aggregation firm, leaked detailed information on individual adults and businesses, a security researcher says. While the exact number of individuals affected isn’t known, the leak involved about 340 million records on a publicly available server.

July 3, 2018 3:23 pm

Facebook and Google use 'dark patterns' around privacy settings, report says (BBC News)

Facebook, Google and Microsoft push users away from privacy-friendly options on their services in an “unethical” way, according to a report by the Norwegian Consumer Council.

May 18, 2018 9:00 am

In Germany, controversial law gives Bavarian police new power to use DNA (Science)

An estimated 30,000 people demonstrated in Munich, Germany, last week to protest a new Bavarian law giving police new powers.

January 25, 2018 9:00 am

What should we have the right to know about a president's health? (CNN)

White House press secretary Sarah Huckabee Sanders has promised a readout of the results as soon as information becomes available. But ultimately, Trump may decide to withhold details from his physical from the public. He can do so because presidents are shielded by the same federal health privacy laws that protect each of us from undue scrutiny.

December 15, 2017 9:00 am

A Chinese province is collecting DNA and iris scans from all its residents (Business Insider)

Authorities in the Chinese province of Xinjiang have begun collecting DNA and biometrics from all its residents, Human Rights Watch reported Wednesday.

July 5, 2017 10:00 am

For Parents of U.K. Infant, Trump’s Tweet Is Latest Twist in an Agonizing Journey (The New York Times)

The long journey for Connie Yates and Chris Gard, whose infant son, Charlie, cannot breathe or move on his own, appeared to have come to an end last week. The courts had ruled that the baby’s rare genetic condition was incurable and that the only humane option was to take him off life support. The couple announced that they were getting ready “to say the final goodbye.” Then Pope Francis and President Trump weighed in, offering statements of support and thrusting a global spotlight onto a heart-rending case that has become a cause célèbre in Britain.

June 21, 2017 9:00 am

China cracks down on fake peer reviews (Nature)

The Chinese government is going on the offensive against scientists who dupe journals by creating fraudulent reviews of submitted papers. A coalition of agencies led by the science ministry announced on 14 June that the government would suspend the grants of researchers involved in such fraud, which surfaced earlier this year when a cancer journal retracted 107 research papers from Chinese authors. And funding agencies in China promised to increase policing of the scientific community to prevent similar deceptions.

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