Tag: privacy

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A DNA App Store Is Here, but Proceed with Caution

July 24, 2017

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A Silicon Valley startup called Helix is betting on the notion that not only do people want to learn more about their DNA, but they’ll also pay to keep interacting with it.

Today the company, which was founded in 2015 with $100 million from genomics giant Illumina, is launching its much-anticipated online hub where people can digitally explore their genetic code by downloading different applications on their computers or mobile devices. Think of it as an app store for your genome (see “10 Breakthrough Technologies 2016: DNA App Store”).

Personalized genetic information has become an affordable commodity. The early success of leaders like 23andMe and AncestryDNA, which sell DNA testing kits for $200 or less, has ushered in a wave of new companies offering direct-to-consumer genetic tests for everything from ancestry to the wine you should drink based on your DNA.

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MIT Technology Review

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The views, opinions and positions expressed by these authors and blogs are theirs and do not necessarily represent that of the Bioethics Research Library and Kennedy Institute of Ethics or Georgetown University.

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Leslie Francis and John Francis on ‘The Week in Health Law’ Podcast

By Nicolas Terry and Frank Pasquale Subscribe to TWIHL here! Two very special guests and the Pod’s first power couple interview. This week we talk with Leslie P. Francis and John G. Francis about their new book, Privacy: What Everyone Needs to Know. Leslie Francis is a … Continue reading

The views, opinions and positions expressed by these authors and blogs are theirs and do not necessarily represent that of the Bioethics Research Library and Kennedy Institute of Ethics or Georgetown University.

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Mental Privacy in the Age of Big Data

By Jessie Ginsberg
Jessie Ginsberg is a second year student in the Master of Arts in Bioethics program and a third year law student at Emory University. 

A father stood at the door of his local Minneapolis Target, fuming, and demanding to speak to the store manager. Holding coupons for maternity clothes and nursing furniture in front of the manager, the father exclaimed, “My daughter got this in the mail! She’s still in high school, and you’re sending her coupons for baby clothes and cribs? Are you trying to encourage her to get pregnant?”
Target was not trying to get her pregnant. Unbeknownst to the father, his daughter was due in August.  
In his February 16, 2012 New York Times article entitled, “How Companies Learn Your Secrets,” Charles Duhigg reported on this Minneapolis father and daughter and how companies like Target use marketing analytics teams to develop algorithms to anticipate consumers’ current and future needs. Accumulating data from prior purchases, coupon use, surveys submitted, emails from Target that were opened, and demographics, a team of analysts render each consumer’s decision patterns into neatly packaged data sets tailored to predict their future buying choices. 

Flash forward to 2017, a time where online stores like Amazon dominate the market and cell phones are reservoirs of personal information, storing intimate details ranging from your location to your desired body weight to your mood. Furthermore, data analysis algorithms are more sophisticated than ever before, gobbling up volumes of information to generate highly specific and precise profiles of current and potential consumers.

The views, opinions and positions expressed by these authors and blogs are theirs and do not necessarily represent that of the Bioethics Research Library and Kennedy Institute of Ethics or Georgetown University.

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How a Company You’ve Never Heard of Sends You Letters about Your Medical Condition

June 20, 2017

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Franco did not have psoriasis. But the year before, she remembered, she had searched for information about it online, when a friend was dealing with the condition. And a few months prior to getting the letter, she had also turned to the internet with a question about a skin fungus. It was the sort of browsing anyone might do, on the assumption it was private and anonymous.

Now there was a letter, with her name and home address on it, targeting her as a potential skin-disease patient. Acurian is in the business of recruiting people to take part in clinical trials for drug companies. How had it identified her? She had done nothing that would publicly associate her with having a skin condition.

When she Googled the company, she found lots of people who shared her bewilderment, complaining that they had been contacted by Acurian about their various medical conditions. Particularly troubling was a parent who said her young son had received a letter from Acurian accurately identifying his medical condition and soliciting him for a drug trial—the first piece of mail he’d had addressed to him besides birthday cards from family members.

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Image: By EFF – Own work, CC BY 3.0 us, https://commons.wikimedia.org/w/index.php?curid=27598327

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Gizmodo

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The views, opinions and positions expressed by these authors and blogs are theirs and do not necessarily represent that of the Bioethics Research Library and Kennedy Institute of Ethics or Georgetown University.

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Trump Opioid Task Force Considers HIPAA Exception for Overdoses

by Craig Klugman, Ph.D.

Confidentiality is one of the sacrosanct principles of medicine. By keeping the secrets that patients share with health care providers, the patient trusts the provider and the provider has the information necessary to diagnose and treat. The Hippocratic Oath, American Medical Association commentaries, 1974 Federal Privacy Act and 1996 Health Insurance Portability and Accountability Act place confidentiality front and center in ethics and law.

Although we place confidentiality on a high pedestal, it does have many exceptions—some which are acceptable and some of which are required. For example, under the Tarasoff rule a provider in most states must report a specific and explicit threat to a third party. Reporting is required for concerns of public health such as abuse or infectious disease. Information must be shared if law enforcement shows a subpoena. A physician may consult colleagues about a case. Administrative assessment and quality improvement review can access patient information without specific patient consent.  In some states, a physician may inform a spouse of certain infectious diseases even when the partner does not want him/her to know. Exceptions are not made lightly since the lack of protecting secrets can decrease patient trust and thus the ability for health care providers to help patients. When exceptions are carved out they are generally because maintaining secrecy would substantially harm the patient or a third party.

A new required exception may be added to this list if New Jersey Governor Chris Christie has his way. He is asking the federal government to carve out a HIPAA exception to allow reporting to a family if a loved one has an opioid overdose.

The views, opinions and positions expressed by these authors and blogs are theirs and do not necessarily represent that of the Bioethics Research Library and Kennedy Institute of Ethics or Georgetown University.

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Tweet Revenge

June 14, 2017

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For many, the essence of gathering at conferences is the sharing of scientific information, a peek at interesting research in progress.

The policy, new this year and unusual for scientific conferences, is the most public manifestation yet of the tension between the drug and medical device companies that help sponsor the ADA’s flagship programs on one side and researchers and patients on the other.

The New England Journal of Medicine doesn’t consider this a problem. Some researchers on Twitter pointed to NEJM guidelines that state “online posting of an audio or video recording of an oral presentation at a medical meeting, with selected slides from the presentation, is not considered prior publication,” according to Medscape.

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Image via Flickr AttributionNoncommercial Some rights reserved by DBarefoot

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KHN

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The views, opinions and positions expressed by these authors and blogs are theirs and do not necessarily represent that of the Bioethics Research Library and Kennedy Institute of Ethics or Georgetown University.

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Helping or hacking? Engineers and ethicists must work together on brain-computer interface technology

A subject plays a computer game as part of a neural security experiment at the University of Washington. Patrick Bennett, Author provided

In the 1995 film “Batman Forever,” the Riddler used 3-D television to secretly access viewers’ most personal thoughts in his hunt for Batman’s true identity. By 2011, the metrics company Nielsen had acquired Neurofocus and had created a “consumer neuroscience” division that uses integrated conscious and unconscious data to track customer decision-making habits. What was once a nefarious scheme in a Hollywood blockbuster seems poised to become a reality.

Recent announcements by Elon Musk and Facebook about brain-computer interface (BCI) technology are just the latest headlines in an ongoing science-fiction-becomes-reality story.

BCIs use brain signals to control objects in the outside world. They’re a potentially world-changing innovation – imagine being paralyzed but able to “reach” for something with a prosthetic arm just by thinking about it. But the revolutionary technology also raises concerns. Here at the University of Washington’s Center for Sensorimotor Neural Engineering (CSNE) we and our colleagues are researching BCI technology – and a crucial part of that includes working on issues such as neuroethics and neural security. Ethicists and engineers are working together to understand and quantify risks and develop ways to protect the public now.

Picking up on P300 signals

All BCI technology relies on being able to collect information from a brain that a device can then use or act on in some way. There are numerous places from which signals can be recorded, as well as infinite ways the data can be analyzed, so there are many possibilities for how a BCI can be used.

The views, opinions and positions expressed by these authors and blogs are theirs and do not necessarily represent that of the Bioethics Research Library and Kennedy Institute of Ethics or Georgetown University.

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The Neuroethics Blog Series on Black Mirror: Virtual Reality

By Hale Soloff
Hale is a Neuroscience PhD student at Emory University. He aims to integrate neuroethics investigations with his own research on human cognition. Hale is passionate about science education and public science communication, and is pursuing a career in teaching science. 
Humans in the 21st century have an intimate relationship with technology. Much of our lives are spent being informed and entertained by screens. Technological advancements in science and medicine have helped and healed in ways we previously couldn’t dream of. But what unanticipated consequences may be lurking behind our rapid expansion into new technological territory? This question is continually being explored in the British sci-fi TV series Black Mirror, which provides a glimpse into the not-so-distant future and warns us to be mindful of how we utilize our technology and how it can affect us in return. This piece is the first in a series of posts that will discuss ethical issues surrounding neuro-technologies featured in the show and will compare how similar technologies are impacting us in the real world. 

Black Mirror – Plot Summary 

Some of the neuro-technologies featured in Black Mirror at first seem marvelous and enticing, but the show repeatedly illustrates how abusing or misusing such technologies can lead to disturbing, and even catastrophic, consequences. This may seem scary enough, but what if the goal of a device was to intentionally frighten its user? 

In the episode “Playtest” a man named Cooper volunteers to help a video game company test out a brand-new device, referred to as a “mushroom.”

The views, opinions and positions expressed by these authors and blogs are theirs and do not necessarily represent that of the Bioethics Research Library and Kennedy Institute of Ethics or Georgetown University.

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Ethics & Society Newsfeed: June 2, 2017

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Politics and World News
White House Waivers May Have Violated Ethics Rules
White House waiver allows all White House aids to communicate with news organizations, even if they involve a “former employer or former client.” Stephen K. Bannon, senior White House strategist, will be able to communicate with editors at Breitbart News.

A Vocal Defender of Ethics Has Fans — and Foes
Walter M. Shaub Jr., director of the Office of Government Ethics, is one of the few people in government willing to second-guess President Trump and his advisers.

New public ethics bill aims to repair France’s battered trust in politicians
French Justice Minister François Bayrou  outlined bill to promote probity in politics, a first major legislative initiative for President Emmanuel Macron’s government at a time where mistrust of elected officials is soaring.

South Korea’s Moon Struggles to Form a Cabinet Meeting His Ethics Standards
South Korean President Moon Jae-in, in an attempt to break with previous corruption and scandal with predecessor Park Geun-hye, is aiming for a “squeaky-clean government” with cabinet candidates.

Bioethics and Medical Ethics

Move over Hippocrates: Harm reduction as the new paradigm for health care
“Doctors routinely cause their patients harm. The oath we should be taking is, “Help others with as little harm as possible.”

Resurrected: A controversial trial to bring the dead back to life plans a restart
Scientists expected to launch a study that will use stem cells in an attempt to reverse brain death. Injection of these cells have been used in clinical trials to treat diabetes, macular degeneration, ALS, etc.

The views, opinions and positions expressed by these authors and blogs are theirs and do not necessarily represent that of the Bioethics Research Library and Kennedy Institute of Ethics or Georgetown University.

Uncategorized

Ethics & Society Newsfeed: June 2, 2017

Image via

Politics and World News
White House Waivers May Have Violated Ethics Rules
White House waiver allows all White House aids to communicate with news organizations, even if they involve a “former employer or former client.” Stephen K. Bannon, senior White House strategist, will be able to communicate with editors at Breitbart News.

A Vocal Defender of Ethics Has Fans — and Foes
Walter M. Shaub Jr., director of the Office of Government Ethics, is one of the few people in government willing to second-guess President Trump and his advisers.

New public ethics bill aims to repair France’s battered trust in politicians
French Justice Minister François Bayrou  outlined bill to promote probity in politics, a first major legislative initiative for President Emmanuel Macron’s government at a time where mistrust of elected officials is soaring.

South Korea’s Moon Struggles to Form a Cabinet Meeting His Ethics Standards
South Korean President Moon Jae-in, in an attempt to break with previous corruption and scandal with predecessor Park Geun-hye, is aiming for a “squeaky-clean government” with cabinet candidates.

Bioethics and Medical Ethics

Move over Hippocrates: Harm reduction as the new paradigm for health care
“Doctors routinely cause their patients harm. The oath we should be taking is, “Help others with as little harm as possible.”

Resurrected: A controversial trial to bring the dead back to life plans a restart
Scientists expected to launch a study that will use stem cells in an attempt to reverse brain death. Injection of these cells have been used in clinical trials to treat diabetes, macular degeneration, ALS, etc.

The views, opinions and positions expressed by these authors and blogs are theirs and do not necessarily represent that of the Bioethics Research Library and Kennedy Institute of Ethics or Georgetown University.