Gene Editing and Eugenics (Opinions Vary)
Posted by Pete Shanks on October 29th, 2015
Critics of efforts to "improve" our species via heritable genetic modification are sometimes reluctant to call this "eugenics," for fear that enhancement enthusiasts will derail the conversation by invoking Godwin's law.
The argument against using eugenics as a frame of reference for new human biotechnologies is generally that the 20th-century variety was defined by state action (not entirely true), whereas human betterment enabled by 21st-century science will be a different thing entirely.
So it’s almost refreshing to read, in a respectable, albeit conservative, daily newspaper:
Eugenics need not be a dirty word — instead, it could be lifesaving technology
The article in question, by Madhumita Murgia who writes for Wired as well as the Daily Telegraph, was prompted by the fact that today the UK law comes into force that allows the use of nuclear replacement technology in attempts to avoid the births of children with mitochondrial (mtDNA) disease.
Murgia argues that
Eugenics is a dirty word, most commonly associated with racist profiling, or Nazi experiments. But the time has come to rethink our attitude. It can also be understood as manipulating the genome in order to solve human health crises.
At least she admits that mtDNA interventions do affect the germline, and are in practice eugenic. But there is a lot wrong with the piece. For instance:
- Murgia ignores the fact the UK law allows clinical use of these biologically extreme techniques, without clinical trials or mandated follow-up.
- She perpetuates the (at least partly discredited) claim that mitochondria have no influence on traits.
- She repeats the misleading statement that germline interventions “could potentially save lives” without acknowledging the distinction between embryos (that may become people who never develop a particular condition) and patients (who have one).
- And she cites, as a reason for hope, golden rice, which Michael Pollan called “a purely rhetorical technology” in 2001 — an assessment that remains accurate today.
The article gets even worse when she turns to the notoriously failed experiments that prompted this year’s very public concerns about the gene editing of embryos. She supports them thus:
A new type of gene editing technique, known as CRISPR-Cas 9, was already used in human embryos by Chinese researchers to modify the gene responsible for beta-thalassaemia, a potentially fatal blood disorder.
This experiment, while decried as unethical and dangerous, was in fact a crucial lesson in revealing the problems with the CRISPR technique, and enhanced the scientific community’s understanding of how gene editing works in practice.
So for the sake of those who need it the most, we must be brave enough push the frontiers of present-day human knowledge into territories unknown.
Robert Pollack warned about eugenics in his letter to Science in May [pdf]. Nathaniel Comfort warned about eugenics at length in The Nation in August. They were not scaremongering, they were helping to bring a debate we need to have out of the shadows and into the limelight. Perhaps inadvertently, so is Madhumita Murgia.
It may be time to return to first principles and explain how eugenics was not merely misapplied, but wrong.
Previously on Biopolitical Times:
Forgotten Stories of the Eugenic Age #4, Part 3: The Blurry Boundaries of Eugenic Infanticide
Posted by Natalie Oveyssi on October 29th, 2015
|The Black Stork movie poster, 1917. Image by Martin Pernick|
[Forgotten Stories of the Eugenic Age is a blog series exploring the lesser-known ways that eugenics affected and engaged American lives during the first half of the twentieth century.]
[Parts 1 and 2 tell the story of Dr. Harry Haiselden’s refusal of life-saving surgery for a baby with disabilities, whom he believed would be a burden on society, and the ensuing controversy.]
While public debate about the Baby Bollinger case subsided, Harry Haiselden continued to work as a physician. He diversified his eugenic medical practices to include sterilizations, and claimed to have personally sterilized nearly 400 patients in Chicago by late 1915.
In addition to sterilizations, Haiselden was called to consult on cases throughout the country to decide whether “defective” infants should receive operations or be allowed to die. Sometimes Haiselden decreed that a baby’s health issues could be corrected satisfactorily through surgery, especially if the baby appeared to be of “bright” intellect. At other times, as Haiselden told news reporters, if he found a child to be a “hopeless idiot,” he would “unhesitatingly advise that it be permitted to die.”
In July 1917, Haiselden once again approached newspapers, this time to report his recommendation that another three children be permitted to die. He explained that Baby Meter, who had already died at one day old by the time stories went to print, had been missing part of her upper skull case and had what appeared to be a small, malformed brain. “When I saw the baby, I knew it had lived too long already,” he said. He concluded that allowing the child to survive would be a crime against the race; letting the child die would be a “favor.” As in the Baby Bollinger case, Haiselden claimed that fifteen other doctors had agreed with his assessment, although again he provided no names.
Baby Mattys was five months old, paralyzed, and had an “incurably affected” head. Haiselden estimated that surgery could prolong the child’s life by a year or two, but said that the parents had agreed to let the child die now. Neither the Baby Meter nor the Baby Mattys case garnered much attention in the press. The third baby for whom Haiselden had recommended death did not receive any news coverage at all.
However, another case that emerged in November 1917 revived controversy, almost exactly two years after Baby Bollinger’s brief life and death.
Two-and-a-half-year-old Paul Hodzima had a microcephalous head and severe breathing difficulties due to a tracheal obstruction. Haiselden prescribed the child drugs that he said would both ease his pain and cause him to lose his appetite so he would starve to death. He asserted that his actions had an altruistic purpose in addition to “saving” the race from another defective child. The drugs would permit the baby’s exhausted, distressed mother to focus her attentions on her other child, who “is normal in every way.”
Perhaps for the first time, Haiselden himself used the word “euthanasia” to describe his work. He said of his decision in the Hodzima case, “Euthanasia or painless killing by God-given drugs relieves the old pain and takes away the horror of death," which arrives within a week to a month. He extolled the benefits of morphine in treating “lives of no value and bodies in constant pain” that, by existing, “check the vitality of others.”
Chicago coroner Peter Hoffman, who had expressed ambivalence in the Bollinger case two years prior, seemed to find this case more distasteful. He warned Haiselden that he would present him to a grand jury and ask for an indictment if the drugs caused the baby's death. Ever seeking the spotlight, Haiselden replied that he would welcome such an action because it would give him the opportunity to “enlighten the public on many things.” Even so, he thought that his critics should “devote their attention to the scores of automobile murders, the abortions, the daily street murders, and similar unchecked crimes against persons who have every right to live,” unlike Paul Hodzima, who had no such right.
Other doctors spoke out against Haiselden's actions. They argued that Hodzima’s pain could be alleviated without condemning him to death. They protested that a physician did not have the right to directly cause death, even if they agreed that it was morally acceptable to “passively” let death occur as an act of nature or divinity. Though some commentators, like W. D. Brooke of Oakland, expressed “outspoken and unqualified approval” of Haiselden’s actions in the Hodzima case on the grounds that a defective individual is incapable of “attaining the social position of her naturally-formed sisters and brothers,” these views surfaced more rarely. To most critics, allowing a baby—especially one they perceived as never really human, never truly alive—to “fade away” was one thing. Poisoning a toddler was another.
The clear demarcations that Haiselden supporters saw between allowing “nature” to take a baby's life and committing murder were evidently not so obvious to others. Shortly after the Baby Bollinger case, Mrs. James F. Darcey of St. Louis told newspapers that she had written a letter to Dr. Haiselden about her six-year-old son who had been labeled defective and currently lived in a city sanatorium. She wrote, “I worry so over him. I would be glad if he were to die. Now, is there any way that he could die, or do you think that there is any cure for such children?” Mrs. Darcey added, “I wouldn’t want to kill him, of course, but I would rather have him dead than in his present condition.”
Other parents seemed unable to distinguish between the “incurable” and “curable” defectiveness Haiselden traveled the nation diagnosing. On July 28, 1917, shortly after Haiselden’s announcement about the determined fates of the three “defective” babies, a father urged surgeons at the Jewish Maternity Hospital in New York not to operate on his newborn son, who had unspecified health problems. Physicians overrode the father’s wishes, believing that the baby had an excellent chance at a complete recovery. Yet according to the baby’s doctors, the father, a supporter of Dr. Haiselden, apparently “could not grasp that this case was different” than the others.
With clamor over the Hodzima case, a police officer went to the child’s home and confiscated the drug his mother had been administering. Haiselden then had the child removed to the hospital. Nothing more is known about the fate of Baby Hodzima, and it appears that despite Coroner Hoffman's threats, Haiselden was never formally charged with a crime.
After Baby Bollinger’s death, biologist Dr. Harold N. Moyer noted in the New York Times, “The public will be educated by this discussion. Those questions must sooner or later come to the attention of the masses.” But the discussion did not persist very long. While the Hodzima case provided a little kindling to temporarily reignite the opposition, after the initial uproar of the Baby Bollinger case waned, Dr. Haiselden’s actions no longer seemed shocking. Just two months after newspapers ceased publishing about the Hodzima case, the New York Times succinctly reported, “Another ‘Haiselden baby,’ so-called, has been permitted to die.” Baby Emma Stanke was two months old and quadriplegic. Inventing yet another questionable boundary, Haiselden remarked that doctors gave the baby “ordinary, human care,” but not “the full benefit of scientific care.” Little else was said of Baby Emma Stanke. There was no public outcry this time.
When Dr. Haiselden died in 1919 of a cerebral hemorrhage while vacationing in Havana, news articles offered little mention of his eugenic preferences or the lives he had allowed “nature” to snuff out. Haiselden once said, “They will criticize me, but I shall have friends too. And some day they will wonder how there could be any criticism.” It seems that in fact a third path was taken: The press apparently forgot that anyone had ever criticized Harry Haiselden.
After Haiselden’s passing, his friend and brother-in-law Dr. Clarendon Rutherford commented, “Every great man is misunderstood, but Dr. Haiselden was maligned. . . . He refused to prostitute his art by prolonging the lives of babies who were born idiots and morons. He was twenty-five years ahead of his time.” Rutherford’s prediction was disturbingly accurate: Child euthanasia became an official program in Nazi Germany in 1939.
The eugenic judgments of Harry Haiselden, other medical and legal professionals, and members of the public relied on moral codes predicated on the imposition of boundaries. Commentators drew boundaries to separate human beings based on determinations of fitness and unfitness, normality and abnormality, and humanity and sub-humanity. Important to these placements were additional boundaries: health and sickness, intelligence and idiocy, and burden and benefit.
With these boundaries set, observers then made additional demarcations to distinguish who had a right to live and who didn't; who was curable and who wasn't; and which conditions or states of being were tolerable, which weren't, and to which gradations.
Then, these boundaries pervaded the medical realm to differentiate “ordinary, human care” from “the full benefit of scientific care” and to determine which actions were acceptable for physicians: intervening to save a life, allowing “nature” to end one, or prescribing drugs to hasten that end. These boundaries also determined what the public should know or discuss. And they facilitated the final determinations—those between inaction, involuntary euthanasia, and murder, and between innocence and guilt.
All the boundaries were blurry. There were many exceptions and no consensus. But their establishment unquestionably engendered the systematic devaluation and dehumanization of people with disabilities. Quite simply, Dr. Harry Haiselden decided not to try to save the lives of several babies with disabilities because he did not believe that those babies should live, and many people supported him. Did the supposed degree of passivity or activity in effecting the outcome of death matter? To borrow the eloquent phrasing of the Los Angeles Times in 1915, Baby John Bollinger “died of inertia,” and inertia is a choice.
Classical eugenics fell into disfavor after the atrocities of the Holocaust. It became less socially acceptable to (openly) refer to persons with disabilities as drains on the vitality of humanity, or to deny them life-saving medical care. But until then, Haiselden’s career contributed to the development of an ethos in which it was normal and unobjectionable for the Chicago Daily Tribune on April 15, 1916, to write of Dr. Haiselden’s latest patient, “Eliza Johnson, the five year old girl who ‘would be better off dead’ because her mental growth stopped when she was but a few months old, is ‘better off.’”
1. “17 Doctors Favor Letting Baby Die.” Washington Post, Nov. 16, 1917.
2. Bonsfield, Dr. M. O. “Haiselden Speaks at Appomattox Club.” Chicago Defender, Dec. 4, 1915.
3. Brooke, W. D. “Unqualified Approval of Dr. Haiselden’s Conduct.” San Francisco Chronicle, Nov. 23, 1917.
4. “Condemns Death Drugging Plan.” Washington Post, Nov. 13, 1917.
5. “Defective Baby Dorothy Cleveland Should Live, Rules Dr. Haiselden.” Washington Post, Mar. 5, 1916.
6. “Doctors Agree Deformed Babe Is Better Dead.” San Francisco Chronicle, Nov. 16, 1917.
7. “Dr. Haiselden Dead in Cuba.” New York Times, Jun. 20, 1919
8. “Dr. Haiselden of ‘Baby Fame’ Dies in Cuba.” Chicago Daily Tribune, Jun. 19, 1919.
9. “Dr. Haiselden to Let Deformed Baby Die.” Chicago Daily Tribune, Jan. 22, 1918.
10. “Evanston Girl Dies Under Knife of Dr. Haiselden.” Chicago Daily Tribune, Apr. 15, 1916.
11. “Haiselden Died Suddenly, Trip Pleasure Jaunt.” Chicago Daily Tribune, Jun. 20, 1919.
12. “Haiselden to Sterilize Youth.” Chicago Daily Tribune, Dec. 19, 1915.
13. “Lets Afflicted Baby Die: Dr. Haiselden of Chicago Again Refuses to Save a Life-Cripple.” New York Times, Jan. 28, 1918.
14. “Meter Baby Dies; Nature Is Kind, Says Haiselden.” Chicago Daily Tribune, Jul. 25, 1917.
15. “Mother Asks Knife to Check Insanity Threat.” Chicago Examiner, Nov. 19, 1915.
16. “Mother of Defective Boy Wishes Him Dead in Letter to Physician.” Washington Post, Dec. 5, 1915.
17. “Mrs. Bollinger Is Dead: Grieved for Deformed Baby Whose Life Was Forfeited.” New York Times, Jul. 29, 1917.
18. “Operation for Boy Would Block Taint.” Chicago Examiner, Nov. 18, 1915.
19. “Opinion Divided on Killing Babies Deformed or Imbecile, as Chicago Doctor Says He Is Doing in Mercy.” Washington Post, Nov. 18, 1917.
20. “Physician Assists Patients to Die.” Los Angeles Times, Nov. 12, 1917.
21. “Physician Lets Second Defective Child Die, Rather Than Operate.” Washington Post, Jul. 25, 1917.
22. “Physician Who Sentenced Babe Defies Coroner.” San Francisco Chronicle, Nov. 14, 1917.
23. “Question Doctor’s Power Over Life and Death.” Los Angeles Times, Nov. 20, 1915.
24. “Save Abnormal Baby.” Washington Post, Jul. 29, 1917.
25. “Surgeon Lets Baby, Born to Idiocy, Die.” New York Times, Jul. 25, 1917.
26. “Threatens Arrest if the Baby Dies.” Washington Post, Nov. 14, 1917.
27. United States Holocaust Memorial Museum. “Euthanasia Program.” Holocaust Encyclopedia. Last updated Aug. 18, 2015. http://www.ushmm.org/wlc/en/article.php?ModuleId=10005200.
28. “Will Rule on Life or Death for Baby.” Washington Post, Dec. 26, 1917.
Previously on Biopolitical Times:
Image by Martin S. Pernick, The Black Stork: Eugenics and the Death of "Defective" Babies in American Medicine and Motion Pictures since 1915
The CRISPR Germline Debate: Closed to the Public?
Posted by Elliot Hosman on October 15th, 2015
The conversation about how to regulate powerful new genome editing tools is heating up as the National Academies’ December “international summit” draws closer.
A Nature editorial on October 14 argues (echoing the conclusions others have drawn [1, 2] as the CRISPR hype has mounted) that valorizing the 1975 Asilomar meeting as a model for modern scientific policy debate is ill-advised:
“When controversy comes calling, rather than asking for an Asilomar conference — which, after all, was closed to the public — scientists should reach outwards.... The world has moved on since then; science must as well.” Nature continues, “[S]cientists who wish to self-regulate ignore public outcry at their peril” and “the most polarized US government in history… can turn any new technology into a political weapon.” While the editors recognize that ‘[d]iscussions should extend beyond researchers and ethicists,” their qualified recommendation – that this means “includ[ing] or at least broadcast[ing] to, the broader public”– is a bit worrisome. (emphasis added)
Unfortunately, Nature then goes on to malign one of the common entry points for public engagement with biotechnological controversies: “[D]iscussions should avoid unhelpful references to the genetically modified humans in the 1997 film Gattaca.” By cordoning off cultural references, this move in effect erects boundaries to public participation and restricts the debate to scientific authorities and terms.
These views are especially troubling because media coverage of the CRISPR controversy in the past few weeks has focused on anything-but-ELSI news, as evidenced by other recent stories.
Nobel Prizes and Consolation Deals
After a flurry of media speculation, Jennifer Doudna and Emmanuelle Charpentier were passed over this year for a Nobel Prize. But on October 8, the day after the Nobel announcement, Doudna’s nascent CRISPR company Caribou Biosciences inked a deal with DuPont giving the Big Ag biotech company exclusive rights to Berkeley’s pending CRISPR patents on plants—if those patents are granted. With DuPont’s $11 billion annual business in GM seeds and crop chemicals, the deal is a serious consolation prize after the missed laurels.
A thought experiment on CRISPR’s profit potential has emerged, in the form of teeny weeny CRISPR pigs, available soon as designer pets. They were created by the Chinese company BGI to serve in human drug trials, their efficient size being optimal for reducing the dosage required for expensive new drugs. BGI is seeking to develop its capacity to serve customers specifically customized piglets in the future.
Commenting on different research with pigs, Jennifer Doudna expressed her surprise in Science that cells even survived an experiment led by George Church in which his team hacked up pig genomes in 62 locations to cut out copies of the “PERV” (porcine endogenous retrovirus) gene that might impede pig-to-human organ transplantation by taking advantage of “an apparently rare phenomenon called gene conversion”—a DNA-cutting “snowball effect.” Church’s response was cautious; he pointed out the difference between what his team has done and targeting numerous unique genes in the same cell, and noted that he is not confident the method is “generalizable”:
It doesn’t mean that we can now change 62 different genes easily. The media greeted Church’s work by celebrating the impending arrival of pig hearts for humans, a nod towards the xenotransplantation for which futurist Martine Rothblatt has been pushing. But Ed Yong at The Atlantic argued that this may be more useful for CRISPR hype than pre-clinical research:
When I reported on such transplants for a feature in 2012, some immunologists mentioned to me that PERVs were a somewhat hypothetical concern. ... My sense is that the PERV-less pigs are remarkable less as a source of organs and more as testament to the power of CRISPR. Undo Buttons
VICE Media’s Motherboard helped to extend the metaphor of genome editing, covering developments in CRISPR gene drives to produce a so-called “undo button.” The article highlighted bioethicist Art Caplan’s advice that:
Regulations should require the development of methods to halt the effects of edited insects or animals should they prove harmful to other organisms, the environment, or humans.
But while cmd+Z patents may be on the horizon, most observers agree that the off-target effects of CRISPR remain a significant obstacle. Unfortunately, some researchers and media commentators seem to be relying on an as-yet unseen deus ex machina to resolve all of the potential consequences of a technology whose effects are far from completely understood.
Ethical, Legal, Social Implications?
And so the sine wave of CRISPR hype, speculative applications, and Twitter-shattering developments has continued these past weeks. The policy debate about how to regulate genome editing also continues, though it often seems to be monopolized by the same few voices.
The Associated Press made a pass at discussing ethics on October 9 under the headline Gene editing: Research spurs debate over promise vs. ethics. The story quoted scientists heavily invested in CRISPR research, in varying degrees of cautious stances. "We need to try to get the balance right," Jennifer Doudna told AP, while George Daley remarked “this isn't a conversation on a cloud,” emphasizing the drive to “move this forward” from families who seek treatment for rare genetic diseases. But in the National Academies’ October 5 “public information session,” Daley emphasized the need to draw the line between “permissible and nonpermissible applications” for CRISPR, clarifying that he was not implying that George Church’s list of protective alleles for germline enhancement would qualify as “permissible.”
Canvassing the social concerns at issue, UNESCO updated its report on the human genome, recommending a moratorium on editing the human germline and that somatic CRISPR interventions be used “only for preventive, diagnostic or therapeutic reasons.” Kings College bioethicists Silvia Camporesi and Lara Marks responded quickly and bizarrely, calling the UNESCO suggestion “undemocratic” and a rehash of “old arguments.” In fact, UNESCO’s concerns — justice, access, the human genome as commons, and the potential for a renewed form of eugenics — deserve the global public’s full attention as we weigh the benefits and risks, known and unforeseeable, of germline intervention into human DNA amid the commercial and political dynamics of rapidly advancing biotechnology.
We have yet to see any real plans for a publically inclusive democratic debate (not like that one) that fully engages the host of social and ethical issues that genome editing manifests.
Previously on Biopolitical Times:
Image via Pixabay
Posted in Assisted Reproduction
, Biopolitics, Parties & Pundits
, Biotech & Pharma
, Civil Society
, Elliot Hosman's Blog Posts
, Genetic Selection
, Global Governance
, Inheritable Genetic Modification
, Synthetic Biology
, US Federal
| Add a comment
Big Money Heading for Consumer Genomics
Posted by Pete Shanks on October 15th, 2015
The direct-to-consumer (DTC) genetic testing business hit a major speed bump when the Food and Drug Administration (FDA) stopped 23andMe in its tracks two years ago. The FDA asserted control over the sale of DTC tests, saying that it required proof of their analytical or clinical validity.
At the time, this was controversial, with libertarians particularly up in arms about "bureaucrats" and "ridiculous bans." Others pointed out that the FDA was doing its job. Matthew Herper in Forbes (or his editor) came up with the headline:
23andStupid: Is 23andMe Self-Destructing?
We now have a definitive answer: No. From the same author, same publication, already online, and in print on November 2:
23andMe Wins A Second Life: New Business Plan Scores $115 Million From Investors
The latest investment, from several venture capital outfits, values the company at $1.1 billion.
A company spokesperson told The Verge that they "will return health reports to consumers by the end of this year." Back in February, the FDA did give the company clearance to sell a test for one specific gene correlated to a rare genetic disease, and CEO Anne Wojcicki is spinning that hard:
Now Wojcicki says she hopes the FDA will allow 23andMe to market some health-related tests again soon. "There's a huge value in actually being the only one who's gone through the FDA process and can sell directly to consumers," she says. Some of them, she hints, may have higher margins than the $99 test.
23andMe has for a long time had the concept of leasing the content of their database for research as an important part of their business plan, and announced a deal with Genentech back in January. A week later, the company announced a similar deal with Pfizer. They have also poached a couple of Genentech executives, and launched their own research unit.
But there are other players diving into the business.
Ancestry.com is in the "very early stages of a conversation with the FDA" about DTC tests for risk of disease. They claim to have a larger DNA database than 23andMe (both have over a million samples), and clearly want to leverage that into sales for research purposes: They announced a deal with Calico Life Sciences in July to "work together to unravel the role that genetics play in how long a person lives." (Calico is a Google company; 23andMe was founded with Google money but Wojcicki's divorce from Sergei Brin may have distanced the companies.)
Also in July, the company announced AncestryHealth (beta here), which seems to be heading in the same direction but via family history rather than genetic analysis. In 2010, family history was called "the gold standard in personal disease risk assessment," and it is by no means clear that genomics has yet caught up.
Invitae (formerly Locus, a spin-off from Genomic Health), is a genetic testing company aimed mostly at physicians. It also has genetic counselors on staff and appears to include DTC and family history components. It went public in February and has raised nearly $200 million.
There may be much more competition in the works, as well as a proliferation of third-party tools. Both Apple and Google have indicated interest in offering data-storage, and possibly analysis, services for genetic information. And a major force in genome sequencing is jumping in.
Illumina, which sees the sequencing market heading a long way upwards of $20 billion, is expanding. In 2013, it committed $450 million to acquire Verinata, which specializes in prenatal tests, and now it wants a piece of the DTC action. They have a cute name for a company with a cute idea: Helix (to launch in 2016) will be "an enormous app store for genetic information." (Hat-tip to Antonio Regalado, who has broken several important stories in MIT Technology Review.)
The idea is that Helix will partner with other companies, which will generate apps on their platform, and then save the data and sell it again for a different app. That is, to paraphrase Regalado, you buy the "speed gene" app (ACTN3, but don't count on it), send in spit, and they lose money on the first one by doing more analysis than they let on. Helix gets some cut of the app sales, and holds on to the data:
"We are betting on the consumer coming back and asking for more, and then you don't have to sequence a second time," says [Illumina CEO] Flatley.
Indeed, along with two venture capital firms, they are betting some $100 million.
Worth noting in this context are a couple of non-profits. DNA.LAND, which launched last week, has neatly grabbed a very slick URL. The founders are academics from the New York Genome Center and Columbia University, who hope to pool data from (at first) customers of 23andMe, Ancestry.com and FamilyTreeDNA. It's free to the customers, who are expected to download their data from the site of origin and then upload it.
The site launched on October 10, and six days later, they have 5758 genomes. That may be a better start than Genes for Good, which is based at the University of Michigan. That launched in April, as a Facebook app, and by one report now has 7200 "research participants."
Linking the silos is scientifically interesting, but it's a little
hard to see the appeal to clients unless, of course, they get massive
The potential for misleading customers, for breaches of privacy (yeah, sure, everything will be as secure as possible), and generally for promoting genism and the market for high-tech medicine aimed at the affluent, is enormous. The FDA did us a major service in 2013 in slowing this juggernaut. Let's hope they hold firm.
Previously on Biopolitical Times:
Image via Wikimedia