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“Evolution right now is in the marketplace”

Posted by Pete Shanks on September 11th, 2014


George Church, professor at Harvard and MIT, multi-faceted researcher, entrepreneur, author and advocate of open-access genomics, gives good quote. He means what he says, and expresses it succinctly and vividly. The latest publication to exploit this is The Economist, which just ran a feature about him called "Welcome to my genome" that includes some of Church's predictions for human genetic modification:

In the future Dr Church sees a world in which individuals tinker with their DNA to eliminate diseases, give their offspring extra abilities or simply to look more attractive. … To travel beyond the Earth, astronauts could also have their bodies altered to give them a better chance of surviving the journey. They could be genetically engineered to resist radiation and osteoporosis, a weakening of the bones which would result from prolonged weightlessness. Those that remain on Earth could be altered to reduce their carbon footprint [by making] people smaller.

Church also endorses the concept of "backing up my brain into another that I have in my back-pack" and (smiling) suggests that things people "think are a million years away or never, are actually four years away."

This might be a shock to Neal Jordan, a young science-fiction author, who set his recently-published mind-uploading book Transgod 500 years in the future. Such uploading is also discussed in another new book, The Proactionary Imperative: A foundation for transhumanism, by Steve Fuller and Veronika Lipinska. Carl Elliott reviewed it in this week's New Scientist under the descriptive online headline, "a manifesto for playing god with human evolution." In print, the title was the catchier "More, or less, than human?" — presumably because the piece closes with the important observation that:

It is precisely because the powerless and disadvantaged have always made such tempting research subjects that strict controls on medical research are essential.

Newly published in the UK, though not due out in the United States till next February, is yet another book that considers such issues, Sapiens: A Brief History of Humankind by the Israeli historian Yuval Noah Harari. His take is darker than that of the techno-optimists. Not only does he question whether modern people are happier than our stone-age ancestors, he is deeply concerned that coming human enhancements will lead to a more unequal society than any we have seen:

"In the 20th century, the main task of medicine was to bring everybody to a certain level of health and capability. It was by definition an egalitarian aim," Harari told the Guardian. "In the 21st century medicine is moving onwards and trying to surpass the norm, to help people live longer, to have stronger memories, to have better control of their emotions. But upgrading like that is not an egalitarian project, it's an elitist project. No matter what norm you reach, there is always another upgrade which is possible."

As a consequence of the efforts of Church (who is mentioned specifically) and others:

"In the 21st century, there is a real possibility of creating biological castes, with real biological differences between rich and poor," said Harari. "The end result could be speciation. We're used to being the only human species around, but there is no law of nature that says there can only be one species of human. With this kind of upgrading treatment we could have, in the not too distant future, more than one human species on Earth again."

Harari is by no means the first to suggest this. Lee Silver notoriously made that prediction — which he seemed to relish — in Remaking Eden, which was first published in 1997. At that time, such expansive views of human possibilities were fueled by the approaching end of the Human Genome Project. Gene interactions turned out to be more complicated than was once hoped, and the wilder speculations died down for a bit. But now, with the advent of more precise gene-altering tools such as Crispr, ambition seems to be rising again, and the repeated warning is regrettably relevant.

The Economist is a business-focused newsmagazine, and notes that since 2007, "Dr Church has co-founded 12 biotech companies and advised many more." His enterprises are mostly focused on genomics, diagnostics, therapeutics and synthetic biology, with a possible sideline coming in DNA-based data storage — all related to his research. They are not apparently driving his choice of projects so much as derived from what he finds and publishes. But he does have a very capitalist orientation, leading him to tell the magazine:

We're well beyond Darwinian limitations to evolution. Evolution right now is in the marketplace.

Church is expressing here an odd combination of hubris and passivity. His ambition takes him "beyond Darwinian limitations" — he can casually discard a few billion years of evolution — and yet he is irresistibly bound to the current economic system. He has that the wrong way round.

Previously on Biopolitical Times:





An International Agreement on Commercial Surrogacy?

Posted by Marcy Darnovsky on September 4th, 2014


A lively and informative three-day forum convened in The Hague from August 11-13. The International Forum on Intercountry Adoption and Global Surrogacy brought together nearly a hundred scholars, women’s health and human rights advocates, and policymakers from 27 countries at the International Institute of Social Studies of Erasmus University, the Forum’s host organization.

The Forum aimed to provide a venue “to discuss ways to improve international standards around the evolving practices of cross-border adoption and surrogacy, in which children typically move from poorer to wealthier countries.”  The Center for Genetics and Society chaired the “Global Surrogacy Practices” thematic area of the conference.

Serendipitously, the Forum occurred in the wake of headlines about two disturbing surrogacy incidents in Thailand. In one case, an Australian couple was accused of abandoning their baby son, who has Down syndrome, with his Thai surrogate mother and returning home with his twin sister (1, 2); the husband was then revealed to have been convicted of multiple child sex offenses that took place between the early 1980s and early 1990s against girls as young as five. In the other news story, a young Japanese businessman fathered sixteen children since June 2013 with Thai surrogate mothers, claiming that he wanted a large family (1, 2).

These incidents took surrogacy out of its usual celebrity-driven spotlight and highlighted the risks of unregulated international surrogacy arrangements for a broader public. For Forum participants, they also underlined concerns about children born as a result of contract pregnancies, and set the stage for discussions of the “best interests of the child,” which is a foundational concept of the 1993 Hague Convention on Intercountry Adoption (HCIA).

By design, the Forum took place in advance of the Hague Conference on Private International Law’s upcoming considerations of its work on intercountry adoption and surrogacy. Implementation of the HCIA, and ongoing concerns about patterns of fraud and “failed” adoption, will be discussed by its Special Commission in spring 2015. In roughly the same time frame, the Hague Conference staff (known as its “Permanent Bureau”) expects to receive guidance from its member countries about whether and how to move ahead toward a possible convention on international surrogacy. Members of the Hague Conference Permanent Bureau participated in the Forum, and indicated their active interest in the discussions and evidence presented there.

Forum participants who have focused on surrogacy and those who have worked on intercountry adoption learned a great deal from each other over the course of the three-day event. Adoption experts presented data regarding the past and present challenges of international adoption faced in countries such as Ethiopia and Guatemala, while surrogacy experts shared findings from India, Mexico, Israel, and elsewhere. Several anthropologists and advocates presented accounts of their fieldwork with surrogate mothers in India, a major destination for international surrogacy, and the country in which it has been most intensively studied.

Meeting jointly and in smaller groups, participants identified and discussed several similarities between intercountry adoption and surrogacy, surrogacy and explored how lessons learned from decades of work by the international adoption community might inform surrogacy practices. One issue that is now more or less settled in the adoption context is that adopted children are entitled to “legal openness” about their biological origins; this raises the question of whether children born in surrogacy arrangements should also be granted access to information about their genetic and gestational origins. Adoptees repeatedly stressed the preservation of records as a primary concern for surrogacy practice. Another question turns on the similarities between the situations of birth mothers of adoptees and surrogate mothers, and on how their health, interests and rights can be protected. A third concerns the role of intermediaries in the two practices, and whether, and under what conditions, agencies are part of the solution or part of the problem.

Differences between intercountry adoption and international surrogacy are also instructive, and were the focus of many discussions at the Forum. In the case of adoption, the assumed starting point is a child in need of a home; with surrogacy, it’s adults who wish to create a child in order to become parents. Also, most countries see intercountry adoption as a practice that at least in some circumstances should be supported; in contrast, most countries currently prohibit commercial surrogacy altogether and face the quandary of what to do when their citizens flout these laws and go abroad to the handful of jurisdictions that allow it.

Participants whose work has focused on issues of parentage and citizenship of children born in international surrogacy arrangements, and those focused on the conditions of women working as surrogates, were able to easily agree that any international convention – as well as other policy or advocacy efforts – should protect the rights and well-being of all parties: children, women working as surrogate mothers, and intended parents. There was also agreement that any international convention should be structured so that it does not pressure  jurisdictions that prohibit commercial surrogacy to loosen their laws.

In its Preliminary Report on the Issues Arising from International Surrogacy Arrangements (March 2012), the Hague Conference Permanent Bureau focused primarily on the “best interests of the child” in intercountry surrogacy arrangements, especially these children’s citizenship and parentage status. But the Report also covers concerns about psychological and health issues they may face, and includes strong language about the urgency of addressing the documented patterns of abuse and human rights violations against surrogate mothers.

While Forum participants shared strong concerns about the problems that intercountry surrogacy arrangements raise, and about minimum standards for any projected international convention, many were fundamentally unsettled about commercial surrogacy itself and about the best policy option for addressing it. Some consider commercial surrogacy unacceptable, on the grounds that it commodifies and commercializes both babies and women’s reproductive capacities. From this view, commercial surrogacy should be prohibited because it exploits women, especially those who have few other economic options, and constitutes a form of baby selling.

Others believe that harms to surrogate mothers can be addressed by defining contract pregnancy as a form of work, and establishing regulation and oversight to improve labor conditions. Their views are based either on a pragmatic sense that international surrogacy is already an established fact and that policies to protect those involved are urgently needed, or on the belief that surrogacy can benefit women who have few other options for earning the kind of money this work can bring them. Some participants reported that they changed their mind on these questions during the Forum, in one direction or another; most agreed that the animated and thoughtful exchanges had opened their minds to aspects of the issues they had not previously considered or taken seriously.

The Forum’s discussions and deliberations made clear that the issues raised by international commercial surrogacy are complex and that opinions about it are varied, even among women’s health advocates and feminist scholars. The wide range of concerns expressed, and the evidence on which they are based, will help inform the Hague Conference as it continues to consider the feasibility of a convention on international surrogacy.

Recordings of the Forum’s three plenary sessions will soon be posted on its public website, and a report on the discussions and deliberations will be published later this fall.

Previously on Biopolitical Times:







"3-Person IVF" Debated in UK Parliament

Posted by Pete Shanks on September 3rd, 2014


Fiona Bruce, MP, opens the debate

The British government continues to move toward legalizing a form of inheritable genetic modification that would combine eggs or embryos from two women in an effort to prevent the transmission of mitochondrial disease. But the controversy over the technique, variously known as "3-person IVF," "mitochondrial replacement," and "nuclear genome transfer," is far from over, and the issues received a public airing in the House of Commons on September 1st.

This was not the official government-initiated debate — that remains some way off — but one brought by a group of MPs who urged the government "to delay bringing forward regulations on mitochondrial replacement" until more research had been completed. (The British system combines the executive and legislative powers but also allows some time for debates requested by members of parliament who do not hold party or government office.) The complete transcript is available, as is archived video.

Opinion in the House of Commons was clearly divided. About half of those who spoke favored moving forward with the technology, some for rather crass reasons ("this is a great piece of British scientific advance"), some out of understandable concern for individual constituents who suffer from mitochondrial diseases. The debate also stirred some local newspapers to feature patients criticizing MPs for "standing in the way of a pioneering new treatment" or wanting to "help future generations."

Perhaps the most striking speech, however, was delivered by Conservative former minister Sir Edward Leigh, who stressed the ethical issues around inheritable genetic modification:

Bioethicists have up until this point expressed almost universal consensus on germ-line genetic modification of our fellow humans, rejecting it as grievously immoral and completely unethical. The consensus is worth pointing out as we must know what the proponents of mitochondrial transfer are asking us to dissent from. They are asking us to dissent from opinion in every other country in the world. In this age of globalisation, we will be divorcing ourselves from the entire community of nations in terms of bioethics. Do we really want to become a rogue state in terms of bioethics?

Leigh was featured in the report by the conservative Daily Telegraph, but this was not a party-political issue. Labour MP Jim Dobbin — a scientist by training — was concerned about the lack of evidence, and cited David King of Human Genetics Alert, who "fears that science is racing ahead of ethics [and] that we are in danger of creating designer eugenic babies." (Stuart Newman and Paul Knoepfler were quoted by the conservative MP Fiona Bruce, who introduced the motion.) Another Labour MP, Robert Flello, endorsed the ethical concerns and stressed the public safety issues:

To put it crudely, there is every possibility that we could be legislating to allow techniques that could cause damaged embryos, resulting in further damaged children. That is not spin; it is a reasonable assumption based on the available data. Newcastle University's own paper concluded that, compared with control experiments, 50% fewer eggs fertilised through pronuclear transfer reached the blastocyst stage-in other words, pronuclear transfer is twice as likely to cause the embryos to fail. … We might not know the result for many generations. We might not know whether some damage has been caused until three, four or five generations later. We simply cannot know that.

The Parliamentary Under-Secretary of State for Health, Jane Ellison, called it a "thought-provoking debate" and did acknowledge that some Members had concerns. She stressed that the draft regulations "would also bring into place important safeguards" but remained committed to moving forward. To what extent the concerns expressed will affect the final proposals remains unclear.

Previously on Biopolitical Times:





Disability Will Never Be Immoral

Posted by Jessica Cussins on August 29th, 2014


The summer's "ice bucket challenge" has brought an extraordinary amount of attention to amyotrophic lateral sclerosis (ALS), a neurodegenerative disease impacting nerve cells in the brain and spinal cord. What you may not know about ALS is that it is only very rarely inherited, at least through any determined genetic mechanism. It is currently thought that "only about 5% of all patients with ALS will have a genetic change" causing the disease. Genetic testing is available for patients who have both symptoms and a family history, but it is rarely recommended.

This does not mean that genetic testing for ALS will not be marketed to people concerned for their health, or for that of their children, especially given the peak in interest at this time. Genetic screening for the "breast cancer genes" BRCA1 and BRCA2 has become widespread, and prenatal genetic tests to detect them are also on the rise. But as with ALS, the vast majority of breast cancer cases have nothing to do with inherited genes.

Of course, there are plenty of traits that are more clearly and commonly linked to genetic variations. Prenatal genetic testing for such conditions significantly raises the stakes of what can be done with that knowledge.

All parents-to-be must be able to make their own choices about their ability to raise any child, but unfortunately too many are presented with a prenatal diagnosis without accompanying information about what it actually means for their child or their family. The slick marketing of prenatal genetic testing has sparked concern about its propensity to dehumanize conditions while normalizing specific responses. This is certainly true for the most frequent chromosomal disorder, Down syndrome, which has also been a prevalent media subject this summer thanks to a couple of strange and sad happenings.

The most sensational story has been that of Baby Gammy, the boy with Down syndrome who was left with his Thai surrogate mother when his Australian parents returned home with only his twin sister, who did not have that extra chromosome. People around the world were outraged as the (still contentious) details emerged: that the parents had asked the birth mother to have an illegal abortion, that they then left Gammy in Thailand when they believed he had mere days to live, that the father had previously been convicted for 22 child sex offenses. The more recent coverage of a California couple who had a similar experience further highlights the prevalence of people unwilling to care for a child with Down syndrome, not to mention the problems that can arise when competing values clash in cases of third-party reproduction.

In a separate incident, Richard Dawkins made a tone-deaf comment on Twitter last week in response to a woman's musings about the ethical dilemma she would personally face if she was pregnant with a child with Down syndrome. His advice: "Abort it and try again. It would be immoral to bring it into the world if you have the choice."

Dawkins has since gone on the defensive and insists that his words have been taken out of context. But these remarks swell a trove of other examples of his intolerance. And his choice of words in this comment cut to the heart of the problem with prenatal genetic testing: What happens when the technology no longer enables a woman's freedom to choose, but turns into a societal pressure to have the most "normal" child possible? What happens when only certain lives are considered morally acceptable?

In response to Dawkins' statement, the UK Down's Syndrome Association put out a statement that highlights the risks of intolerance for differing ways of being, and points to a more thoughtful way forward:

People with Down's syndrome can and do live full and rewarding lives, they also make a valuable contribution to our society. At the Down's Syndrome Association, we do not believe Down's syndrome in itself should be a reason for termination, however, we realise that families must make their own choice. The DSA strives to ensure that all prospective parents are given accurate and up to date information about the condition and what life might be like today for someone with Down's syndrome.

Dawkins is not the only prominent figure to have publicly displayed prejudice about Down syndrome. In a recent piece in The Guardian, Ian Birrell recalled bioethics professor John Harris telling him on TV that it is "morally wrong" for parents to choose a child with a disability if science offers an alternative. Birrell countered:

Those preaching this new eugenics conflate health and disability, harm and difference. They dismiss how diversity enriches the world, reject complex issues of choice, ignore implications of inferiority…. This is not to quibble with any woman's sacred right to choose, merely to highlight the casual acceptance that disabled lives are second-rate and can be discarded as too burdensome.

Structural discrimination toward people with disabilities is still common. But the outrage over Baby Gammy's abandonment and Dawkins' comment provides a spark of hope. Apparently many people cherish human diversity, and reject the view that Down syndrome is something to be weeded out just because we now have a technology that could enable us to do so.

Previously on Biopolitical Times:





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