Tag: personal genomics

Bioethics Blogs

Biopolitical News of 2016

The biggest surprise of the year was probably the birth, in Mexico, of a baby who was conceived following controversial mitochondrial manipulation (“3-parent IVF”). The location was chosen by a New York-based fertility doctor who noted that in Mexico “there are no rules.” Since 3-person IVF is technically a form of inheritable genetic modification, one big question is whether its increasing use and normalization will open the door to wider acceptance of gene editing for human reproduction.

The gene editing shockwaves of 2015 – when Crispr was first applied in human embryos, and controversy about the prospect of using it for human reproduction became explicit – developed into a somewhat more predictable flood of activity and comment in 2016. The big, and unfortunate, news here is perhaps the non-news: the absence of any significant efforts to encourage public participation in deliberations about whether powerful new genetic manipulation tools should be used in efforts to control the traits of future children and generations.

The most consequential news of the year for biopolitics as for so much else may well turn out to be the US presidential election result, but the consequences themselves remain somewhat unclear. Trump’s comments about having “the right genes” are ominous warning signs, which are perhaps getting worse, as partly described below.

Cross-border commercial surrogacy was in the news this year because of scandals, disputes, and changes in the laws of several nations where it had taken hold. Commercial pressures were particularly apparent in the slick marketing being used to promote egg freezing among young women with no fertility problems.

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.

Bioethics Blogs

Review of Blame: A Novel

Because it is a central theme of this novel, it seems appropriate for me to start this review with my own “conflict of interest” – or as I prefer to see it, my “competing interest.” So I note that my parents and Tony’s parents were friends when we were young children and though he and I were never friends, we were colleagues in adulthood insofar as we attended the same medical/human genetics meetings and conferences and kept in touch with our separate critiques of these issues, even discussing them, when we met.

Readers, therefore, can make their own assessments of my comments about Blame as to whether or not they are “fair” or even unbiased. Readers should also know that though I have a long history of writing and publishing book reviews, both in print and online, with only one exception these have been works of non-fiction; critiquing a novel is something I vowed not to do once the first was complete, but here I am….

Enough about me; the book is what is important here, and it is an important book – especially for those who are not trained in or otherwise familiar with human/medical genetics and the range of ethical, social, legal, and political issues raised by the applications of what is learned in a lab. It is a novel of fiction and a novel of science, often eerily portraying not only what is happening now but what is possibly very soon to come as new technologies are normalized, “monetized,” and enter “ordinary” medical practice.

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.

Bioethics News

The Flip Side of Personal Genomics: When a Mutation Doesn’t Spell Disease

November 15, 2016

(Nature) – Concerns about the potential harm in sequencing the genomes of healthy people come as new companies vie to provide such services for the general public. In August, researchers reported that the average person carries about 54 genetic mutations that are considered lethal, but that don’t seem to harm their health. As a result, physicians don’t know what to tell healthy people who harbour these variants.

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.

Bioethics Blogs

Just What We Need: Slicker Infertility Marketing

The most unsettling line in the recent Forbes article on the ambitious infertility startup Prelude comes about halfway through. “The IVF industry in the United States,” writes Miguel Helft, “has everything private equity likes—scale (about $2 billion annually) and growth (more than 10% a year), along with being fragmented and having outdated marketing.” 

In an era with precious few opportunities for double digit returns, why not turn the reproductive health sector into the next big thing by furthering its consolidation and selling services using lifestyle content?  “Hey,” Prelude’s hipster-chic splash page calls out, “how’s your fertility doing?” 

If that piques your interest, scrolling down takes you on a kind of virtual stroll through the streets of Williamsburg, Wicker Park, or the Mission District, where you encounter edgily coifed, tatted, and bespectacled folk who presumably are spending as much time thinking about their reproductive fitness as they do their next Americano or Kimchi taco.  But you’ll find scant information about financial, psychological, or medical risks of egg retrieval (unless you count the presumed donor pictured alongside the quotation “I was worried about the discomfort, but seriously, it was no worse than a bikini wax—and for a much higher purpose”) or about failure rates after eggs are thawed and implanted.  Everything is upbeat and empowering, geared toward the “millennial mindset of health, wellness, and control.”

Prelude is targeting 20 to 30 year olds and the main product it’s selling them is their own eggs and sperm on ice.  The site proclaims, “If you are in your 20s or early 30s, there is no better time than now to bank your eggs and sperm.

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.

Bioethics Blogs

5 Reasons Why We Need People with Disabilities in the CRISPR Debates

This article was cross-posted on Disability Remix, the blog of the Paul K. Longmore Institute on Disability at San Francisco State University.

Maybe you haven’t heard of CRISPR-Cas9. To be honest, if I hadn’t previously worked at the Center for Genetics and Society, I probably wouldn’t have heard of it either. It’s a new genetic technology that brings modification of the human germline closer in reach than ever before.

Driven by the promise of allowing parents to avoid passing on incurable genetic diseases to their offspring, the use of CRISPR to engineer human embryos presents serious risks with particularly strong implications for people with disabilities—in the present and future. It’s been getting plenty of press. And yet, as someone who tries to stay up to date constantly with what’s trending in the disability social media scene, it has seemed to me that CRISPR has been more or less absent.

Why aren’t people in the disability community talking more about this?

Why should people with disabilities have to keep spending their time justifying their existence rather than just enjoying it at present?

An event poster for Future Past in 2013 is shown, with purple clouds, and a DNA helix forms the base of a signpost with two directions: future and past.I recall a conference I organized with the Longmore Institute in 2013, “Future Past: Disability, Eugenics, and Strange New Worlds.” Disability studies scholar and activist Marsha Saxton began her panel by sharing a memory of talking with a genetics counselor while contemplating getting pregnant. The counselor exclaimed, “Gee, if I’d have known Spina Bifadas turned out as well as you, I would not have recommended selective abortion as much as I’ve done!”

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.

Bioethics Blogs

Questions about Deaths in Cancer Trials using Gene-Altered Cells

In the past month, the media has reported seven patient deaths of subjects enrolled in separate gene therapy clinical trials being conducted by Juno Therapeutics and by Ziopharm Oncology, Inc., both aimed at immunotherapy-based cancer treatments that have sparked widespread hope. Despite these deaths, the trials continue to move forward.

Media coverage of trials related to gene therapy has portrayed the clinical research rollercoaster.  Just this past week, The New York Times ran an unusually lengthy and high-profile series of articles in the Sunday paper about immunotherapy treatments for cancer, some involving genetic modification of immune cells. The articles describe the promising aspects of engineering one’s own immune system to fight cancer, including dramatic stories of tumors “melting away” and promises of complete remission.  

Yet commentary on the ethical implications of these events has been scant, and these events raise a number of concerns about what bioethicists call “therapeutic misconception” – vulnerable patients seeking enrollment in a clinical trial with the mistaken belief that the gene therapy is approved by the FDA to be safe and effective. The clinical trial deaths also highlight lingering questions about transparent reporting of adverse events to the FDA and appropriately navigating financial conflicts of interest.  Instead, numerous articles have focused on how these deaths impact the bottom line: corporate stock prices

The excitement has been building for some time. In June 2015, MIT Technology Review described Juno’s experimental T-cell immunotherapy for leukemia as “Biotech’s Coming Cancer Cure” and profiled the “miracle” recovery of 20-year old leukemia patient Milton Wright III.

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.

Bioethics Blogs

The Case Against Public Investment in Reproductive Genetic Modification

Philosopher Tina Rulli argues that three-person IVF is not a “life-saving therapy” or even a medical treatment at all. Rulli explains why the technology does not meet a plausible social value standard that would justify public research investment, and why other germline modification techniques may not either.

UC Davis Assistant Professor of Philosophy Tina Rulli published a report titled “What is the Value of Three-Parent IVF?” in the July-August 2016 Hastings Center Report.

If you have seen any of the countless descriptions of three-parent or three-person IVF, also called mitochondrial replacement, as a “life-saving treatment,” you might find the question in the title confusing. How could any life-saving treatment not be of value?

As Rulli explains, the claim that this technology would save lives is “inaccurate and exaggerated.” Three-person IVF would not cure, treat, or save anyone. At best, it would allow women affected by a particular kind of mitochondrial disease to have an unaffected child who is mostly genetically related to her.  

The experimental procedure works by genetically engineering an embryo to combine the intending mother’s nuclear DNA with another woman’s mitochondrial DNA. The choice a woman would make is not “do I save my child?” but “do I want to have a child in this way?” Rulli makes a strong argument that these are not morally equivalent, and that it is irresponsible to act as though they are.

How one thinks about this distinction between creating an unaffected genetically related child and saving lives may have implications well beyond three-person IVF.

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.

Bioethics Blogs

Cross Post: If you can screen for brown eyes, you should be able to edit out genetic disease

Not everyone’s choice of scarf. Shutterstock

It has long been known that cognitive diversity is important to collective performance. Diverse groups are more productive, more innovative and better at solving complex problems than less diverse groups. And recent research suggests that cognitive diversity also drives scientific progress.

Such research has direct implications for how we regulate reproductive technologies. Late last year, the London Sperm Bank was criticised for its decision to ban sperm donors who suffer from minor neurological disorders, including dyslexia and Asperger’s syndrome.

Selection against these conditions may be problematic because it could reduce valuable forms of cognitive diversity. People with dyslexia and Asperger’s syndrome see problems from unique perspectives and use different methods to solve problems.

The fact that the London Sperm Bank could implement such a policy highlights the great inconsistency in how the selection for and against different inherited conditions is regulated.

Gamete screening (GS) – the screening of sperm and egg donors based on their features – is widely unregulated. Not only can it be used to select against mild disabilities such as dyslexia, but it can also be used to select for non-disease traits such as eye colour and height. Companies such as Elite Egg Donors, allow you to choose between various donors based on a wide variety of factors including education, weight, and ethnicity. While GS is still relatively imprecise, it is becoming more powerful.

Only candidate. Shutterstock

In 2013, personal genomics company 23andMe received a patent to a technology called “gamete donor selection based on genetic calculations”.

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.

Bioethics Blogs

On Cyborgs and Gene Editing: Lessons from Orphan Black

The latest season of Orphan Black takes a cue from Donna Haraway’s “A Cyborg Manifesto” to probe the boundaries of identity, humanity, and perfection, as it reminds us that mainstream genetic and reproductive technologies are closer to the show’s more radical technologies than we might think.

In “A Cyborg Manifesto,” originally published in 1985, Donna Haraway describes a cyborg as “a cybernetic organism, a hybrid of machine and organism, a creature of social reality as well as a creature of fiction.”

The clones of the BBC America television show Orphan Black seem to fit that definition well – they all possess snippets of synthetic DNA entwined in their genome, and often exist in an at least partially fictitious reality designed to better control their actions. However, the latest season explores the possibilities and meanings of cyborg-ness in greater depth. Fittingly, each episode is named with a quote from Haraway’s work: “The Collapse of Nature,” “Transgressive Border Crossing,” “The Stigmata of Progress,” “From Instinct to Rational Control,” “Human Raw Material,” and “The Scandal of Altruism.” And as Orphan Black engages with what it means to be a cyborg, this fourth season also situates itself in the ongoing conversation on new human genetic and reproductive technologies in the real world, including genome editing.

[SPOILER ALERT]

Neolution is the name of the show’s pro-eugenic movement, whose goal is to take control of human evolution. In the first episode of the season, a character reads from the book on Neolution: “The individual can only begin the journey to the extraordinary by casting off the genetically mandated human shell.”

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.