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Blog Posts (3960)

March 24, 2017

Bioethics & Wine

I never thought I’d have the opportunity to use this blog title. Never, that is, until I stumbled across a company called Vinome, a California start-up that offers a curated wine service based on a customer’s individual taste profile. What makes this wine subscription service unique is not its price (although, at around $65 a bottle, it’s just a bit outside of the typical price-per-bottle for many wine club members). At Vinome, your taste profile includes not only a list of questions about your preferences, but also information from DNA sequencing from the saliva sample you provide to the company. The company website proclaims this is “A little science and a lot of fun,” but experts are skeptical about whether there is any science involved at all.

Holding aside the question of scientific plausibility, companies touting direct-to-consumer genetic screening for ancestry, medical issues, or just plain fun include information in the fine print that would give any bioethicist pause. While the Vinome website requires patrons to check the box indicating “I have read and understand the Vinome Informed Consent” prior to ordering, that “informed consent” is only available if the customer voluntarily clicks on the informed consent link. Buried at the bottom of the informed consent screen is a sentence that reads:

 

“You allow Vinome to retain your data as part of Vinome’s secure research database, for use by Vinome or its research affiliates, in an effort to improve and expand services. If any commercial product is developed as a result of the use of your data, there will be no financial benefit to you.”

 

In case the business interests are still unclear, here is more from their Terms of Service:

 

“By submitting DNA to Vinome, you grant Vinome a perpetual, royalty-free, world-wide, transferable license to use your de-identified DNA, and to use, host, sublicense and distribute the anonymous resulting analysis to the extent and in the form or context we deem appropriate on or through any media or medium and with any technology or devices now known or hereafter developed or discovered.”

 

That’s quite a sweeping consent, and one of which I suspect most customers will never be aware. Individuals who are just hoping for some scientific guidance on whether to buy the merlot or the syrah are also unwittingly sending their genetic information into the stream of commerce to be collected, analyzed, bought, sold, and mined for data. We might be willing to give up some of our personal information in exchange for cheaper groceries, but buying and selling our spending habits seems a lot less invasive than doing the same to our DNA. Despite our best efforts, genetic information can never truly be de-identified – DNA itself is our best identifying information.

Direct-to-consumer marketing of genetic screening has seen much growth in the past few years. In addition to Vinome, the consumer genomics firm Helix has partnered with several entities to offer services, including National Geographic (offering ancestry tracing), ExploraGen (offering “personalized epicurean experiences”), and Invitae (offering interpretation of genetic screening to provide “actionable findings” related to various diseases – requires clinician authorization). While use of genetic information in research is heavily regulated and a source of ongoing debate, should consumers of commercial genetic testing be protected as well? Are these customers aware of the information they are freely giving, and the myriad ways their most personal information may someday be used? And how does informed consent fit into this middle ground between medicine and commerce? It seems to me, at the very least, the consumer should be required to give explicit consent beyond merely “checking the box” – whether such consent could ever really be “informed” is another question altogether.

The Alden March Bioethics Institute offers a Master of Science in Bioethics, a Doctorate of Professional Studies in Bioethics, and Graduate Certificates in Clinical Ethics and Clinical Ethics Consultation. For more information on AMBI's online graduate programs, please visit our website.

March 23, 2017

Reading Lolita in Residency

Howard Trachtman, MD Department of Pediatrics NYU School of Medicine Throughout history, reading books has often been viewed with deep suspicion by figures in authority. The Dominican priest Girolamo Savonarola collected and publically burned thousands of objects including books on February 7, 1497 in Florence, Italy, an infamous episode that […]
March 23, 2017

Conscience Based Objection in Healthcare and Limiting Patient Liberty- Arizona Gives Broad Right

Governor Ducey The Arizona Legislature has just passed a bill that permits healthcare providers to refuse patient-requested end-of-life treatment.  On March 22, S.B. 1439 was sent to Governor.   The bill provides in part: "A health care ...
March 22, 2017

Government, More or Less: Overcoming Legacy Barriers to Behavioral Health Integration

Join us at Mitchell Hamline for this CLE presentation and discussion on March 30.
March 22, 2017

Texas Considers Letting Doctors Lie to Patients

by Craig Klugman, Ph.D.

The Texas Senate just passed a new bill (SB 25) that would shield doctors from a lawsuit if a baby is born with a disability even if the doctor knew of the concern and chose not to tell the parents.…

March 22, 2017

Healthcare Unaffordable? Perhaps Your Doctor Is Partly to Blame

Here is a news article from Canada, experiencing the kind of healthcare inflation that causes them to call experts in the U.S. for advice—people like me, but also some actual credible authorities! Some see it as an eternal struggle: the … Continue reading

The post Healthcare Unaffordable? Perhaps Your Doctor Is Partly to Blame appeared first on PeterUbel.com.

March 21, 2017

From My Students Most of All

By Zev Leifer The Talmud (Taanis 7a) quotes Rabbi Chanina who declared that, “I have learned much from my teachers, more from my colleagues and most from students.”  There is a tendency amongst educators, in general and more so, I suspect, amongst medical educators (given their many years of training and vast experience) to take […]
March 21, 2017

Intersectionality and the Dangers of White Empathy when Treating Black Patients

by Keisha Ray, Ph.D.

(Originally presented at the 7th International Health Humanities Consortium meeting in Houston, Texas)

I’ve had many odd, seemingly racially motivated experiences with racially uneducated and racially insensitive doctors and nurses.…

March 21, 2017

The 14 day rule – A brief update

In early December, this blog commented upon the 7 December 2016 conference at University College London, which debated rethinking the ethics whether or not to increase the UK’s restriction on experimentation on human embryos from 14 to 28 days. One result of that conference is that the Progress Educational Trust (the sponsor of the original conference) has since submitted a request to the House of... // Read More »
March 20, 2017

This is a GREAT day to have a cardiac arrest!!!

I thought that headline would get your attention.  Okay, so actually, yesterday would have been an even better time to have a cardiac event, but today’s still good.  March 17-19, the American College of Cardiology was meeting in Washington, DC.  Lots of top cardiologists were away from their hospitals and not seeing patients.  Today I […]