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:
From “the Dangerous Womb” to a More Complex Reality
Posted by Jessica Cussins on August 21st, 2014
The policing and criminalization of pregnant women’s bodies has a long history that is soaked in discrimination. Methods used have ranged from coercive sterilizations, to forcing women to give birth in shackles, to imprisoning women for taking drugs while pregnant, to increasing restrictions on women’s access to safe abortions.
The recent focus in the scientific community on epigenetics – the way in which environmental stimuli impact gene expression – must contend with the deep scars and ongoing struggles of this contentious reality.
Mounting research that suggests the importance of a healthy environment for a growing fetus, as well as throughout a person’s life, may be used in incredibly positive ways to enable much needed societal changes: For example, it can support efforts to increase access to fresh food in dismally dry “food deserts,” and to help provide non-criminalized treatment for addiction. The responsible dissemination of information can also help empower people to make better choices for themselves and their family.
But there is also the chance that this information will be brandished as shiny new scientific data to be used once again to justify only more ardent vilification of mothers and pregnant women.
A letter submitted to Nature last week titled “Society: Don’t blame the mothers,” addresses exactly this concern. The co-authors – seven academics working on the developmental origins of health and disease and the cultural studies of science – point to recent press headlines, noting how epigenetic research is already being simplistically depicted to prioritize maternal fault and under-represent compounding paternal, familial, and societal factors.
Given that it is now known that stress and diet can cause epigenetic harm to sperm, leading to increased problems in offspring, there is certainly no scientific basis for the near-exclusive focus on women and their habits.
A Science Special Issue on parenting published last week also addresses the impact of epigenetics on offspring, but thankfully includes many different reports that portray a much more complex picture of the different ways that both parents and society can profoundly impact children’s development.
The articles cover a wide range of topics. “Parenting from before conception” takes an in-depth look at the impact of epigenomics due to the age and environmental exposures of both parents. It further discusses transgenerational impacts, as well as epigenomic variation beyond the DNA, including noncoding RNA and the mitochondria.
An article titled “An experiment in zero parenting” reports that serious neglect and lack of stimulation – as evidenced in Romania's Abandoned Children – can lead to severe cognitive and emotional distress, causing long-term changes to the development of the brain and “profound intellectual delay,” though eventual care can lead to some improvement.
“Neural control of maternal and paternal behaviors” discusses the fact that there is “a large range of intrinsic and environmentally driven neural modulation and plasticity,” pointing to how different factors impacting the neural system can lead to drastic changes in parental behavior, and again stressing the importance of parental interaction for children’s healthy development. Additionally, “The biology of mammalian parenting and its effect on offspring social development” investigates “the hormonal and neural regulation of mammalian parenting and its consequences for infant social development,” pointing to such phenomena as the activation of certain neural pathways after a child is born that encourages parents to nurture and protect their child, which in turn impacts the neural systems of that child.
“Nature's first functional food” highlights how mothers’ breast milk had been a chronically under-studied super-food full of unique complex carbohydrates providing all kinds of protections for infants. “Maternal mental illness” poses hard questions about our societal priorities, pointing to the hardships that women can face in “the only developed country in the world without paid maternity leave.”
Many of the new findings reported in this special Science issue have disturbing implications for the impact of IVF and other assisted reproductive techniques on the health of resulting offspring. Here are some words of caution (extracted from three different articles) about the kinds of detrimental changes caused by manipulations involved in IVF:
1. “At least in mice, conception by IVF alters later placental and fetal development, growth trajectory after birth, and metabolic parameters and behavior in adult life.”
2. “In vitro procedures expose the early embryo to highly unusual conditions, with possible long-term health consequences as the child ages.”
3. “ART-conceived animals do appear more likely to have problems metabolizing glucose, and this effect may be transmitted to subsequent generations, probably through epigenetic changes.”
It seems clear that assisted reproductive technologies, as well as the environmental and social structures we find ourselves in, carry under-studied risks not only for our children, but for future generations. Parents-to-be deserve to know about all of these factors so they can make informed decisions about how to live their lives and raise their families. And policy makers now have the important opportunity to use this data to help create powerful changes to the structure of our society.
The fact that biology is much more mutable than we have previously believed is not only of relevance to pregnant women, but to all of us and to the society we live in. Focusing on “the dangerous womb” is far too simplistic, and a problematic omission of other compounding factors.
"We're All One of Troy's Babies": A Celebration of Troy Duster
Posted by Victoria Massie, Biopolitical Times guest contributor on August 21st, 2014
On Friday, August 15th, I was one among a multitude of people finding a seat in Booth Auditorium in Boalt Hall for the event “Celebrating Troy Duster.” But the event turned out to be less a celebration and more a family reunion, a testament to the work done by organizers Osagie Obasogie and Duana Fullwiley.
For the sake of formalities, there was an agenda, and panels throughout the day pointed to themes that have been central to Troy’s work: the “slippery slopes” of political inclusion and racial science around understanding health disparities; the technique of engaging scientists on race in genetic research; the work of the sociologist in policing, forensics, and behavioral science; and lastly “connecting the dots” between Troy’s work in the academy and his commitment to the public and community engagement. But with each panelist’s approach to the podium, it became increasingly undeniable that every reference to the “Dusterian”—after all, Ruha Benjamin pointed out, we have “Bourdieuian”—analytical method of recontextualizing in context, of noting the pre-frame, was inextricably tied to the love and care infused and cultivated in each of their relationships with the man of the day.
I first met Troy Duster in Rochester, NY in the summer of 2009. I had just finished my sophomore year of college, and was beginning to research the various social ties entangled within the genetic ancestry testing results my dad had sent me eight months earlier. Make no mistake, I found my father’s test results to be a godsend. Although I came to the University of Rochester with the sole purpose of pursuing a molecular genetics major, I quickly found my passion for the double helix in jeopardy during my first semester when I was introduced to anthropology, and specifically the lecture on how race is socially constructed. It was an idea that was new and yet so familiar as I found myself finally able to put my lived experiences into words. I came to learn that all the times I found myself being denied the full potential of my identity as a black woman had less to do with my inadequacies of being able to fit into a box and more to do with the conditions that make such a box possible. Intoxicated by the first taste of this form of self-aware liberation, I yelled to my friends as we met for lunch “Race doesn’t exist!” Full with hunger and anxious to beat the noon rush at our favorite dining hall, they began to resist my statement, only to find the refusal to surrender to my adamant assertion futile in reaching our ultimate goal: eating.
Over time, I would learn that neither my friends nor I had managed to get race right. When my father surprised me with an email containing the results of an ancestry test he had taken for himself, I found myself confronted with the context I had left out at lunch. Specifically, I began recognizing that saying race does not exist does not change the way race comes to matter. In the attempt to piece together the silences inherited by those whose ancestors’ personhood was considered property, my father extended to me information of a home we weren’t supposed to know. But even this new form of knowing was one I met with skepticism. It bridged together my love for DNA and my interests in race, but in ways that provided more questions than answers, so much so that I could spend a summer researching them in 2009. And having been lucky enough to have had an advisor who did her Ph.D. at NYU, I was immediately pointed to Troy’s work.
Five years later, having just finished my qualifying exam in the anthropology department at Berkeley, and preparing for my upcoming year and a half of fieldwork for the same project, I am still indebted to my first meeting with Troy’s work in Rochester. And as I sat in Booth Auditorium, listening to the countless scholars who Troy influenced and who have also influenced me, I couldn’t help but be in awe and at home at the same time. People from across the country came together to celebrate the many ways Troy seemed to simultaneously embody and exceed the title of scholar, activist, teacher and friend, but with a swagger-infused humility not easily mirrored but always inspiring us with the everyday challenge to try.
Moving on from Nicholas Wade to Continuing Concerns about Scientific Racism
Posted by Pete Shanks on August 14th, 2014
The sad saga of Nicholas Wade, former international reporter turned laughing stock, seems to be staggering toward its inevitable end. However, the issues that he — unintentionally — highlighted remain, and badly need to be addressed.
Wade's fatuous book, A Troublesome Inheritance: Genes, Race and Human History (see 1, 2), has drawn what surely must be the definitive response from, at last count, 143 population geneticists. Essentially (to quote Marshall McLuhan, as scripted by Woody Allen) they each say:
You know nothing of my work.
The scientists published a short letter in The New York Times Book Review on August 8, commending the July 10th review of Wade's book by David Dobbs and thanking Dobbs "for his description of Wade's misappropriation of research from our field to support arguments about differences among human societies." The letter notes that:
Wade juxtaposes an incomplete and inaccurate account of our research on human genetic differences with speculation that recent natural selection has led to worldwide differences in I.Q. test results, political institutions and economic development. We reject Wade's implication that our findings substantiate his guesswork. They do not.
We are in full agreement that there is no support from the field of population genetics for Wade's conjectures.
The letter was noticed in various corners of the press, including the Los Angeles Times and the [London] Independent, as well as the news pages of Nature and Science. Some of the readers' comments in Science are a source of grim humor if you are so inclined.
Wade is not backing down. In a response [pdf, here or here], he accuses his critics of being "driven by politics, not science" and claims to have "seen no basis" for the "repeated assertions that the book is scientifically inaccurate."
This is rubbish. Wade did seem to have a poor connection when discussing the book with Agustin Fuentes on May 5; perhaps he failed to hear everything that was said. Perhaps he did not read the reviews by credentialed scientists from several disciplines with the care and attention they deserve (for instance, 1, 2, 3, 4, 5); perhaps, like a child afraid of the wicked witch, he closed his eyes and skipped over the ugly parts. Or perhaps he is so convinced of his own unique insight that mere facts bounce off the carapace that protects his prejudices.
Whatever the reason, Wade (who still insists that he opposes racism on principle) seems desperate to engage with his critics. But they are right to refuse: He claims to correct them in their own field, and he is wrong. There is no further debate to be had with one who will not learn.
There is, however, a continuing and even growing need to have a series of related discussions, which should involve both academics of many specialities and the public in general, at all levels of formal and informal education. Population geneticists and anthropologists may be quite clear about the fallacies that surrounded the subjects of race and genetics, but it is equally obvious that some psychologists and physicists are not. Some Americans may blithely insist that we live in a post-racial society; most of us know better.
Sticking strictly to fields directly connected with genetics, racial fallacies and simplistic interpretations of inadequate data have been — are being — used in attempts to sell race-based medicine, for instance, as well as relatively trivial ancestry scams. Race-based forensic applications of technology, biased databases, even advocacy of predictive sentencing, need to be addressed, critiqued, corrected and discarded. The social construction of race needs to be addressed at social, cultural and political levels.
Cherry-picking from scientific papers to misrepresent their conclusions in order to bolster prejudice must not be allowed to continue.
That is the big lesson to be drawn from Wade's experience.
Personalized medicine may, eventually, have an important role to play in society. If and when it does, the differential distribution of alleles between populations is not really going to be vital: what will matter is that a given patient has a given allele, and whether it is rare or common in a particular geographic or cultural milieu will largely be irrelevant (except for effects of the external environment).
But it's going to take both a lot of research and a lot of discussion to reach that point. If Wade's hasty grab for the spotlight helped to make that clear, then something useful came of it. Perhaps it can yet be the start of an important discussion.
Previously on Biopolitical Times: