Hot Topics: Genetics

Blog Posts (116)

May 11, 2017

All we like SHEEFs, Part 2

Carrying on with last week’s musings… In thinking further, I think my attempt was confused by conflating the moral status of a SHEEF—a synthetic human entity with embryo-like features, something more than a clump of cells of human origin, but less than a human being—with reasons why I might want to hold that nobody should ever make certain sorts of SHEEFs. Again, SHEEFs are human,... // Read More »
May 5, 2017

All we like SHEEFs (?)

So, how should we address the moral status of synthetic human entities with embryo-like features (“SHEEFs”)? First, we should consider that these are human, as opposed to non-human, if they arise entirely from cells of human origin.  Human/non-human hybrid creatures are just that, and partially human, biologically.  But are any of these human beings, as in, in California the crime of murder is described as... // Read More »
May 5, 2017

All we like SHEEFs (?)

So, how should we address the moral status of synthetic human entities with embryo-like features (“SHEEFs”)? First, we should consider that these are human, as opposed to non-human, if they arise entirely from cells of human origin.  Human/non-human hybrid creatures are just that, and partially human, biologically.  But are any of these human beings, as in, in California the crime of murder is described as... // Read More »
April 26, 2017

All We Need is (Unconditional) Love

On March 24, 2017, Joe Gibes posted an entry on this blog, entitled “A ‘disabled’ person speaks out against a particular form of discrimination.”[1] That post featured links to several stories about Kathleen Humberstone, a young woman with Down Syndrome who spoke at a recent UN event commemorating World Down Syndrome Day, which was observed on March 21. After reading through Joe’s post and the... // Read More »
April 25, 2017

Genetic Fingerprints and National Security

by Beau P. Sperry, Megan Allyse & Richard R. Sharp

Biometric surveillance is rapidly becoming an integral component of national security policy and practice.…

April 21, 2017

Do Extended Pluripotent Stem Cells Raise Ethical Issues?

On April 6, the journal Cell published work (subscription or online article purchase required) from the Salk Institute in San Diego, in which scientists have created a new “reprogrammed” stem cell. These cells are called “extended pluripotent stem cells” or “EPS” cells.  They are different from embryonic stem (ES) cells, which are removed from intact embryos that arise from fertilization—typically requiring specific creation and destruction... // Read More »
April 13, 2017

Reining in the SHEEFs

Consider the human embryo… Ordinarily, it arises from the union of a sperm and egg to form a zygote, which is totipotent, that is, able to develop into a full individual.  In our time, fertilization can happen artificially, as with artificial insemination or in vitro fertilization, or naturally through the process that is accessible even to educated fleas.  But the zygote develops into a multicellular... // Read More »
March 24, 2017

Psychiatric Genetics in a Risk Society

by Nicole Martinez-Martin

Kong and colleagues raise substantive areas of ethical concern regarding the translation of psychiatric genetic research into clinical and public health contexts.…

March 24, 2017

A “disabled” person speaks out against a particular form of discrimination

Amidst lots of dark and tragic stories, a bright ray on the BBC website this week: Kathleen Humberstone, a 17 year-old English girl with Down syndrome, addressed the UN in Geneva to mark World Down Syndrome Day. Rather than reading anything I have to say, a far better use of your time would be to read what Ms. Humberstone said. You can find the full text here; if you scroll down... // Read More »
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.

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Published Articles (60)

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

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

American Journal of Bioethics: Volume 17 Issue 4 - Apr 2017

Psychiatric Genomics and Mental Health Treatment: Setting the Ethical Agenda Camillia Kong, Michael Dunn & Michael Parker

American Journal of Bioethics: Volume 17 Issue 4 - Apr 2017

Psychiatric Genetics in a Risk Society Nicole Martinez-Martin

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

A Framework for Unrestricted Prenatal Whole-Genome Sequencing: Respecting and Enhancing the Autonomy of Prospective Parents Stephanie C. Chen & David T. Wasserman

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

Modern Pregnancies and (Im)Perfect Babies Stephanie A. Kraft

American Journal of Bioethics: Volume 16 Issue 12 - Dec 2016

Does Lack of “Genetic-Relative Family Health History” Represent a Potentially Avoidable Health Disparity for Adoptees? Thomas May, Kimberly A. Strong, Kaija L. Zusevics, Jessica Jeruzal, Michael H. Farrell, Alison LaPean Kirschner, Arthur R. Derse, James P. Evans & Harold D. Grotevant

AJOB Primary Research: Volume 7 Issue 3 - Jul 2016

Concerns about genetic testing for schizophrenia among young adults at clinical high risk for psychosis Ryan E. Lawrence, Phoebe Friesen, Gary Brucato, Ragy R. Girgis & Lisa Dixon

AJOB Primary Research: Volume 7 Issue 3 - Jul 2016

Clarifying ethical responsibilities in pediatric biobanking Merle Spriggs & Craig L. Fry

AJOB Primary Research: Volume 7 Issue 3 - Jul 2016

Lay attitudes toward trust, uncertainty, and the return of pediatric research results in biobanking John Lynch, Janelle Hines, Sarah Theodore & Monica Mitchell

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News (884)

April 25, 2017 9:00 am

Bomb attack damages Monsanto research center in Italy (Science)

Earlier this week, in the middle of Easter night in Olmeneta, Italy, an unknown person attacked the Monsanto Research Center with several “bottle bombs” or Molotov cocktails, small improvised explosive devices. The 16 April assault, apparently a protest against research on genetically modified organisms (GMO), did not injure anyone but firemen worked for hours to stop a blaze set off by one bomb that devastated the cold room where most of the small facility’s experimental seeds are usually stored.

March 31, 2017 9:00 am

Europe says University of California deserves broad patent for CRISPR (Science)

The European Patent Office (EPO) announced on 23 March its “intention to grant a patent” to the University of California (UC) for its broad-based claims about the genome-editing tool popularly known as CRISPR. UC, on behalf of several parties, has been in a pitched battle with the Broad Institute of Cambridge, Massachusetts, over CRISPR patents, and the new decision marks a sharp departure from the position of the U.S. Patent and Trademark Office (USPTO).

March 29, 2017 9:00 am

Zika mosquito genome mapped – at last (Nature)

As the Zika virus raced across the Western Hemisphere in 2015 and 2016, geneticists eager to battle the outbreak felt crippled. The genome sequence of the Aedes aegypti mosquito that spreads Zika was incomplete and consisted of thousands of short DNA fragments, hampering research efforts. With help from a new technique for stitching together genome sequences, scientists have finally ‘assembled’ the genome of A. aegypti as well as that of Culex quinquefasciatus, a mosquito that transmits West Nile virus.

March 14, 2017 9:00 am

Scientists Closer To Creating A Fully Synthetic Yeast Genome (NPR)

Scientists have taken another important step toward creating different types of synthetic life in the laboratory. An international research consortium reports Thursday that it has figured out an efficient method for synthesizing a substantial part of the genetic code of yeast.

March 13, 2017 9:00 am

Employees who decline genetic testing could face penalties under proposed bill (Washington Post)

Employers could impose hefty penalties on employees who decline to participate in genetic testing as part of workplace wellness programs if a bill approved by a U.S. House committee this week becomes law.

March 2, 2017 9:00 am

An epigenetics gold rush: new controls for gene expression (Nature)

Over the past few years, researchers have identified some of the machinery involved in regulating these marks. Each requires a writer to place it, an eraser to remove it and a reader to interpret it. As the identities of these proteins emerged, scientists have come to understand that m6A affects not only RNA splicing, but also translation and RNA stability.

February 28, 2017 9:00 am

Biologists propose to sequence the DNA of all life on Earth (Science)

Yesterday, at a meeting here organized by the Smithsonian Initiative on Biodiversity Genomics and the Shenzhen, China–based sequencing powerhouse BGI, a small group of researchers upped the ante even more, announcing their intent to, eventually, sequence “all life on Earth.”

February 24, 2017 9:00 am

The Birth of CRISPR Inc (Science)

As the science grew even more compelling and venture capital (VC) beckoned, the jockeying to start CRISPR companies became intense. The research community was rent apart by concerns about intellectual property, academic credit, Nobel Prize dreams, geography, media coverage, egos, personal profit, and loyalty. A billion dollars poured into what might be called CRISPR Inc.

February 23, 2017 9:00 am

How Silicon Valley Is Trying to Hack Its Way Into a Longer Life (Time)

Rather than wait years for treatments to be approved by federal officials, many of them are testing ways to modify human biology that fall somewhere on the spectrum between science and entrepreneurialism. It’s called biohacking, and it’s one of the biggest things happening in the Bay Area.

February 21, 2017 9:00 am

Harvard and M.I.T. Scientists Win Gene-Editing Patent Fight (The New York Times)

The Broad Institute in Cambridge, Mass., will retain potentially lucrative rights to a powerful gene-editing technique that could lead to major advances in medicine and agriculture, the federal Patent and Trademark Office ruled on Wednesday.

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