Racial Health Disparities: It’s Inequality, Not Genes
Posted by Jessica Cussins on April 23rd, 2015
Heart disease is the single biggest contributor to the racial mortality gap in the US, which, in case you didn’t know, is still really bad. Many hoped that advances in genetics would help explain and ultimately close that gap.
So Jay Kaufman, Professor in Epidemiology & Biostatistics at McGill, recently led a study to systematically review six years’ worth of genomic research to see if there is any evidence that genetic differences explain this major racial-health disparity.
What he found is incredibly important. He found, effectively, nothing.
A wonderful article in The Atlantic by Jason Silverstein gets right to the heart of it with its title: “Genes Don't Cause Racial-Health Disparities, Society Does.”
Silverstein reminds us that an explicit goal of the Human Genome Project was to close health disparities, and that we’ve invested more than $1 billion in the field every year since. But given the results of efforts to understand racial health disparities by looking at our DNA, it might be argued that pretty much anything else would have done better.
You’d think that educated people knew this, right? That race is a social construct with the same scientific legitimacy as “grouping raccoons, tigers, and okapis on the basis that they are all stripey?” Some researchers seem to acknowledge this, and recommend
studying “ancestry” rather than “race.”
But Silverstein points out that “ancestry” tends to be merely a proxy for race, masquerading with “a phony moustache and glasses.” Moreover, the lack of precision in the use and definition of “ancestry” has rendered it nearly meaningless scientifically.
The bigger take-away, he argues, is that no matter how you cut it up, biological difference simply isn’t a major driving force behind health disparities. Social inequality, racism, and injustice are. Given what we know now about the ineffectiveness of this research, he suggests that “[looking] for the cause of racial disparity in genetics isn’t only scientifically flawed. It is morally flawed as well.”
For more on how biotechnological advances have worked to re-construct social categories of race as biological phenomena, the following is a list of some essential reading:
Previously on Biopolitical Times:
“It’s a Baby Farm.”
Posted by Jessica Cussins on April 23rd, 2015
“Outsourcing Embryos” is the name of a new fifteen-minute documentary from Vice for HBO in which correspondent Gianna Toboni travels to India to delve into the industry of commercial surrogacy. What she uncovers is eye-opening, even for those who have been following the surge of cross-border “womb-renting” for years.
India’s medical tourism industry is now worth $2.3 billion, with $500 million of that solely from the legalization of commercial surrogacy. Couples travel to India from all over the world to take advantage of prices that are a sixth of the cost in the US - about $30-60,000 from a reputable clinic. But, as Toboni explains, the problem with commercialization is that “businesses start under-cutting one another and next thing you know, we’re bidding for the cheapest baby.”
To find out how low the prices could go, Toboni went undercover and found a man working from a back alley who offered a guaranteed delivery for just $12,000.
At the other end of the spectrum is Dr. Nayna Patel, who is surely the most well-known fertility specialist in India. She is currently building what will be the largest surrogacy clinic in the world, an “all inclusive facility” that will eliminate the need for a hospital entirely.
Patel schedules all of the women working for her as surrogates to undergo C-sections, so she can perform deliveries back to back. After watching one herself, Toboni was visibly shaken. “We just saw a baby being born ten minutes ago and already we’re racing back upstairs to see the next baby being born. It’s like this turn-over is so quick here.”
According to Patel, surrogates carrying a foreign couple’s baby can make about $9,500 for one, or $12,000 for twins. Patel is adamant that surrogacy is highly beneficial to the woman who take part. And indeed, many women find it to be the best option available to them.
A woman named Vasanti told Toboni, “Nobody likes doing this. I didn’t have a home, so I thought I could build one by being a surrogate.”
Another surrogate, Nisha, told her “It does feel a little bad, but what can I do? I’m helpless. There are no alternatives.”
Toboni found non-profit organizations that purportedly “empower” women to find employment, but effectively work as surrogacy recruiters by explaining to women living in extreme poverty how the payment compares to the alternatives of housecleaning or menial labor. Other recruiters regularly comb through the slums.
Despite Patel’s insistence that she discourages this practice, a recruiter found in the Mahavir slum claimed to be working directly for her, and seemed to be skimming several thousands of dollars off the payments to women that had been quoted by Patel.
There is currently no law regulating surrogacy in India. Dr. Ranjana Kumari of the Centre for Social Research explains the position of her group,
We are not against surrogacy. We think if the child can be given to a childless couple, it’s a noble idea. But we are against commercialization. This commercialization is totally based on an exploitative system. The violation of rights of a poor woman.
Throughout their Centre’s extensive research, they did not find a single surrogate who had a copy of her contract, leaving them without any legal recourse if they are under-paid or encounter serious medical problems.
The documentary includes Michele Goodwin, Chancellor’s Professor of Law at UC Irvine, explaining that clinics are motivated to implant multiple embryos at a time to maximize their chances of delivering a "successful product.” As well as putting the surrogate mother and babies at additional health risks, this ends up leading to “extra” babies that the commissioning parents weren’t expecting. As the Baby Gammy controversy of last summer made clear, some unwanted babies simply get abandoned.
And this documentary uncovers an even darker side of the problem. While posing as potential clients over dinner with a surrogacy broker, two Vice correspondents are shown a baby and told, “you can take that baby now… Let’s just make the deal now.” Toboni explains their reaction,
We soon realized that this woman was actually trying to sell us the baby they had brought with them to the restaurant. This wasn’t renting someone’s womb. This was human trafficking.
This fifteen-minute documentary shows the complex reality of the unregulated world of commercial surrogacy, beyond the smiling photos of beautiful babies and appealing price tags. As Goodwin puts it: “It’s a baby farm.”
Previously on Biopolitical Times:
Seeking Your Input: Survey on Egg Retrieval
Posted by Gina Maranto, Biopolitical Times guest contributor on April 22nd, 2015
Egg harvesting is a medical procedure that has been used since the late 1970s in infertility clinics worldwide. The number of egg harvesting procedures has risen steeply in the last decade due to increased prevalence of in vitro fertilization (IVF) with so-called “donor eggs” rather than the birth mother’s own eggs, as well as to growing demand for human eggs from scientists investigating stem cells. Within the last two or three years, infertility specialists have also begun promoting egg harvesting and freezing as supposed means for otherwise healthy young women to ensure their future ability to have children.
Short-term risks of the type of egg harvesting that is accompanied by hormone treatment are well known. Yet despite the fact that hundreds of thousands of women have undergone egg harvesting, few long-term studies of potential risks have been done, and those have yielded contradictory results (e.g., Ness, 2002, Althius, et al., 2005; Brinton, et al., 2005).
The practice of soliciting young women’s participation in what has become a global market for eggs thus raises critical ethical issues concerning informed consent (Beeson and Lippmann, 2006). Our team at the University of Miami and CGS is surveying young women’s knowledge and attitudes toward egg harvesting and its risks. Such information will yield critical insights into how best to frame health information intended to enable women to make informed choices about this procedure.
If you’ve ever donated your eggs, or if you’re interested in taking a survey about egg donation and are a woman 18-40 with U.S. citizenship, we’d like to hear from you.
This survey will take less than 10 minutes to complete and will help us understand how much American women in this age group know about egg harvesting; how many women have had their eggs harvested and for what reasons; and how women understand and think about the long- and short-term risks of the procedure.
If you are willing to take the survey, the link is here.
This is an anonymous survey; your answers will not be connected to you in any way. We will not be connecting your name, although we will ask for some geographical information if you have had your eggs harvested or have donated eggs in the past.
After you complete the survey, you will also be given information for contacting the principal investigator, Gina Maranto, at the University of Miami in case you would like to participate in a followup interview (which is entirely optional).
Althuis, M.D., Moghissi, K.S., Westhoff, C.L. et al. 2005. Uterine cancer after use of clomiphene citrate to induce ovulation. American Journal of Epidemiology 161, 607–615.
Beeson, D. & Lippmann, A. 2006. Egg harvesting for stem cell research. Reproductive BioMedicine Online 13, 573-579.
Brinton, L.A., Kamran, S., Moghissi, M.D. et al. 2005. Ovulation induction and cancer risk. Fertility and Sterility 83, 261–274.
Ness, R.B., Cramer, D.W., Goodman, M.T. 2002. Infertility, fertility drugs, and ovarian cancer: a pooled analysis of case–control studies. American Journal of Epidemiology 155, 217–224.
Gina Maranto is Director of Ecosystem Science and Policy and coordinator of the Environmental Science and Policy program at the University of Miami's Leonard and Jayne Abess Center. She is also a Fellow at the Center for Genetics and Society. She is the author of Quest for Perfection: The Drive to Breed Better Human Beings (1996).
Previously on Biopolitical Times:
The Rights of Donor-Conceived Offspring
Posted by Naomi Cahn, Biopolitical Times guest contributor on April 15th, 2015
[This blog is cross-posted at Concurring Opinions.]
The April 14 Washington Post
prints an interesting article on regulation and the fertility industry.
It quotes both Marcy Darnovsky and me on the lack of oversight of
assisted reproductive technology in this country. Another issue that it
addresses is the rights of donor-conceived offspring to learn the identity of their egg and sperm donors. As I’ve written in numerous articles and books, it is a fundamentally important right for all donor-conceived offspring to learn the identity of their donors.
Other academics disagree with this position, believing it important to protect the identity of gamete donors for a variety of reasons. I disagree, and I think the law has a critical role to play in ensuring respect for the rights of donor-conceived people. Parents can make the legal choice never to find out the identity of their donor. By contrast, donor-conceived offspring have no such legal right in the United States: unless their parents opted into a known donor program, they are unable to learn the identity of their donors. While their parents’ choices affect them as children, donor-conceived children grow up, and many become curious about their origins. Yet the law’s tight focus on the parent-child relationship excludes legal questions relating to donor-conceived adults.
Donor conception has drawn on traditional adoption practices, including beliefs that a person did not need to know that she was adopted and did not need health or genetic information, but could be brought up as though she were the biological child of her parents. It is, by contrast, now well accepted in the adoption world that adopted individuals not only have the right to know they are adopted, but also that they may be interested in finding their birth parents. An increasing number of states now allow adopted individuals to obtain their original birth certificates; thirty-one states have set up mutual consent registries, and others have established search and consent and other procedures.
There is no such widespread recognition in the donor-conception arena, notwithstanding the increasing number of donor-conceived family members who are looking for one another. The Donor Sibling Registry has now matched more than 12,000 people, and the numbers are growing. (Full disclosure: I am a member of the DSR’s board.) The DSR is a mutual consent registry that works diligently to maintain the privacy of its members.
Yet the DSR can’t change the law. Instead, we need to do as so many other countries, including England, have done: End donor anonymity and give donor-conceived offspring the right to learn about their origins.
Naomi Cahn is the Harold H. Greene Professor of Law at The George Washington University Law School. She is the author of numerous law review articles and several books, including The New Kinship (2013), and Test Tube Families: Why the Fertility Market Needs Legal Regulation (2009); she has co-authored Finding Our Families: A First-of-Its-Kind Book for Donor-Conceived People and Their Families (2013)(with Wendy Kramer) and Marriage Markets: How Inequality is Remaking the American Family (2014)(with Professor June Carbone); and she has co-written casebooks in the fields of family law, trusts, and estates.