Blog RSSBlog.

03/24/2017

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.

Comments are closed.