One set of CRISPR questions that poses hugely significant threats to future generations goes something like this:
Can we engineer human germ cells and embryos to re-wire genetic risk factors?
And if we think it’s safe enough, should we try to create genetically modified babies?
To address these questions, the video raises some helpful points. It notes the likelihood of market pressures and consumer incentives and how they might impact what sort of children and what sort of modifications become popular (”Buy two enhancements, get the third free!”).
It also illustrates the massive iceberg of unknowns facing those who are interested in pursuing genetic upgrades in the IVF clinic.
Yet the video is restricted in its ability to fully countenance the future of designer babies by its cheery optimism, by its unsupported claims that a new biological era of “intelligent design” is just inevitable, and by its assumption that people will naturally warm up to the idea as time goes on.
One of the video’s sanguine assumptions is that any social downsides are confined to scenarios of evil dictators and mad scientists. While North Korea’s current situation makes it easy to construe our own social and political context as reasonable by comparison, there is no shortage of social justice concerns that transcend crude state-sponsored violence.
The video also indulges in some anti-aging hype—a key cornerstone for much of the Silicon Valley collective's future-making projects, and a generator of headline gems like this recent one:
The company’s visuals bring to mind the TED Talk that entrepreneur Juan Enriquez gave in November 2015 entitled “We can reprogram life. How to do it wisely.” Enriquez's slides used emoji to describe the coming era of “intelligent design” in which humans “re-program” the “lifecode” of future generations. For all the policy wonks in the house, Enriquez has a super thorough plan for containing this GMO explosion:
We should take about a quarter of the Earth and only let Darwin run the show there. It doesn't have to be contiguous, doesn't have to all be tied together. It should be part in the oceans, part on land. But we should not run every evolutionary decision on this planet. We want to have our evolutionary system running. We want to have Darwin's evolutionary system running. And it's just really important to have these two things running in parallel and not overwhelm evolution.
Like Enriquez, Kurgesagt’s CRISPR video, for all of its unbound future visions, adopts an exceedingly narrow vision of democratic progress and governance. “The only thing we know for sure,” it asserts, “is that things will change irreversibly.”
By this logic, technology’s impending arranged marriage to biology is inevitable, and we might as well sit back and watch the Silicon Valley “cradle of innovation” unburden us from our human imperfections—one human birthing experiment at a time.
But before we give up on the current reproductive order, it seems only fair that we first admit our troubling assumptions about what it means to be human:
Departures from the optimum—and certainly most disease and disability—simply equate to abject suffering without individual or societal value, and should be de-selected, prevented, secluded, avoided, exterminated.
Some genes are just “bad”—or at least “inconvenient” in our society—and not worth bringing into the world. Some genes are just “good” and worth increasing in the population.
Each of us has a moral duty to cleanse our children’s genome before birth to maintain a superior human race—I mean, for the state’s interest in public health.
These assumptions are in fact the rationales of eugenics past. Do we really want to marry them to the angel-winged free market of Big Biotech?
Let’s be clear about what’s at stake. Let’s interrogate the assumptions that tell us our children must be bred from the finest stock available. Let’s challenge ourselves to forego conceiving of our children as value-enhanced property in a biopolitical marketplace. Let’s fight back against the politics and social pressures that tell us our bodies are the sole source of our value. Let’s ignore folks who say that we are internally deficient, that inequality is natural, and that we are each personally responsible when systems of power and oppression cut off our ability to thrive. Let’s allow all of us to be a little more human – imperfections, genetic variants, and all.
David Jensen, who writes the essential California Stem Cell Report blog, published a detailed front-page article in the Sacramento Bee on September 2 with the eye-catching headline:
Stem cell company paid $443,500 to former head of state agency that funds research
As has previously been reported, Alan Trounson joined the board of StemCells Inc. in 2014, about a week after he resigned from a six-year stint as President of the California Institute for Regenerative Medicine (CIRM) to return to Australia. CIRM, which is funded by California taxpayers, had previously allotted some $40 million of grants to the company, based just across the Bay from Stanford.
As Jensen recounts, some of those grants had raised questions; one was made despite having been twice rejected by the grant committee. In addition, Irving Weissman, the Stanford University-based co-founder of the company, has received research grants amounting to $30.5 million from the agency. Weissman notoriously appeared in 2004 television ads promoting the establishment of CIRM, while wearing a white coat and identifying himself as a doctor (which he also is), but not as a stem cell entrepreneur. Weissman’s academic institution, Stanford University, has received over a quarter of a billion dollars from CIRM, including over $40 million for a new building.
The new information that Jensen turned up in SEC filings was how much StemCells Inc. paid Trounson after he joined its board: $59,500 in cash over a year and a half (far more than any other board member) and nominally $384,000 in stock options. (The stock has since tanked completely.)
Did Trounson or StemCells Inc. do anything illegal? Quite likely not. Was this transaction appropriate? Absolutely not! It’s scandalous, but it’s the kind of scandal that was built into CIRM from its very inception. Nature, in September 2004, during the run-up to the state election that established CIRM, opened an article this way:
Opponents of California's $3-billion plan to fund embryonic stem-cell research say that the proposal would give researchers carte blanche to rewrite well-established ethical guidelines to suit their needs. They say the research institute planned under the initiative will be exempt from legislative supervision and, if established, will be able to make its own rules about conflicts of interest and informed consent.
Among those opponents was the Center for Genetics and Society, whose extensive pre-election analysis is archived here. In January 2006, CGS examined CIRM’s first year and published a detailed “report card” [pdf]. The overall grade we gave CIRM was C–, and on several issues, including minimizing conflict of interest, we handed out a D.
Jesse Reynolds, then Director of Project on Biotechnology Accountability for CGS, deserves particular credit for drawing attention to the conflicts of interest embedded in the structure of the stem cell agency. He attended numerous public meetings of CIRM, testified for investigations of the agency before the California legislature and the state’s “Little Hoover Commission,” wrotemanyop-eds, and helped to push for reforms.
CIRM was also scrutinized by the Institute of Medicine in 2012. Its report affirmed the existence and significance of the conflicts of interest and structural flaws that CGS and other public interest voices had identified even before the agency was approved by the 2004 ballot measure on which backers spent some $35 million. CGS’s invited testimony to the Institute of Medicine, and its press release welcoming the IOM’s report, provide details.
CIRM is now slowly running out of the $3 billion of public funds allocated to it in 2004, and is expected to wind up in 2020. It has provided an object lesson in how not to set up and run an independent public-funded agency. These latest revelations should end any speculation about extending its charter.
Posted by Emily Galpern, Biopolitical Times guest contributor on September 8th, 2016
The Center for Genetics and Society and allies are celebrating the demise of AB 2531, a bill that would have allowed payments to women who provide eggs for research, effectively expanding the commercial market for human eggs from the fertility sector to the research context.
The bill, which was sponsored by the American Society for Reproductive Medicine, died in the State Legislature last week, never making it to the Governor’s desk. Assemblymember Autumn Burke anticipated a veto from Governor Brown and decided not to bring it up for a vote in the Assembly when it was sent back for concurrence, after passing the Senate on August 29 with amendments that seemed to be a tepid response to opponents’ objections.
CGS and allied women’s health, reproductive justice and public interest organizations opposed the bill because of dramatically insufficient information about the health effects of egg provision; the impossibility of true informed consent given the lack of data; the likelihood that low-income women, women of color, and immigrant women would most likely be affected; and the bill’s conflict with national recommendations for federal policy and with state law. For a full explanation of these concerns, see the opposition floor alert and CGS’ letter to the Senate Health Committee.
The bill was covered by veteran journalist David Jensen in the Capitol Weekly (Senate eyes human egg business), and was criticized in a number of op-eds and columns, including one by former Senator Deborah Ortiz, author of a 2006 law that assured certain protections for egg providers:
We hope legislators have come to understand the complexity of this issue and, instead of bringing payment and undue incentive to the table, begin to call for long-term studies to provide the information women need to make truly informed decisions about their bodies and their health.
Emily Galpern works with the Center for Genetics and Society as a consultant.
Ruth Hubbard — prominent biologist, feminist scholar, multi-faceted social justice advocate, and critic of what she termed “the gene myth” — died on September 1 at the age of 92. Her scholarly and public interest efforts to track and shape the politics of human genetics were an important inspiration to many working on these matters today, including those of us who helped establish the Center for Genetics and Society.
Ruth took on a range of political and social challenges related to the politics of science, genetic determinism, race, and gender. Among these was human germline modification, which she strongly opposed. In 1999, she co-authored Human germline gene modification: a dissent with Stuart Newman and Paul Billings in The Lancet.
In 1993, she wrote in Exploding the Gene Myth:
Clearly, the eugenic implications of [human germline modification] are enormous. It brings us into a Brave New World in which scientists, or other self-appointed arbiters of human excellence, would be able to decide which are “bad” genes and when to replace them with “good” ones….We need to pay attention to the experiments that will be proposed for germ-line genetic manipulations, and to oppose the rationales that will be put forward to advance their implementation, wherever and whenever they are discussed.
The Boston Globe’s obituary for Ruth provides details about her long and influential life and career, as does an obituary written by her family that can be found here.