On Vampires and Chromosomes
Posted by George Estreich, Biopolitical Times guest contributor on May 9th, 2013
If our entertainments reveal what’s on our collective minds, then we seem to be thinking quite a bit about human modification. Spider-Man, X-Men, the Aaron Cross of the most recent Bourne thriller: all have powers, and all are genetically different, whether bitten, mutated, or engineered.
The Twilight books, and their subsequent movie adaptations, aren’t usually thought of in this vein. But despite the air of romance, Stephenie Meyer’s four-book series, in which a human girl (Bella) falls in love with a pale yet hot vampire boy (Edward) is really about superheroes. And like the hyphenated superheroes of recent movies, Meyer’s vampires are genetically different: they have a superabundance of chromosomes. (The vampires have twenty-five pairs, unlike our twenty-three.)
In our fang-free human life, having extra chromosomes is not usually seen as a plus. Aneuploidies, including Down syndrome, have been targets of prenatal testing as long as such testing has existed. As such, those conditions attract a host of polarizing questions, not least about abortion. In Breaking Dawn—the last book in the Twilight series—these questions come to the fore. Bella, still a mortal, becomes pregnant with a half vampire child thought to be a risk to her life, and a danger to the society around her. Edward wants her to abort, and she wants to keep the child.
The quarrel, and indeed the book, is framed by genetics. The high chromosome count signifies both ultimate superpower (in the case of the vampires) and the undesirable child (in the case of Bella’s fetus). The Twilight series, in other words, evokes both our fears about human modification and our anxieties about reproduction.
A Petition for Change in Memory of Dan Markingson
Posted by Emily Smith Beitiks on May 8th, 2013
Today marks the nine-year anniversary of 26-year-old Dan Markingson's premature death. His story, covered previously here at Biopolitical Times, illustrates the medical-industrial complex at its worst: greedy university professors who put pharma profits before their patients' well-being, combined with ongoing institutional support from the University of Minnesota.
Many alumnae, myself included, have declared our disappointment at our alma mater. And recently, a number of important people of international reach have been motivated by Markingson's story and are demanding justice on his behalf. A change.org petition, initiated by Markingson's friend Mike Howard, implores Minnesota Governor Mike Dayton to investigate the case. Despite ongoing efforts by the U of M to bury the issue, advocates for Markingson continue to demand answers and are gaining increasing support.
High-profile signatures have already come from:
I encourage Biopolitical Times readers to learn more about Markingson's story. If you do, you will almost certainly want to sign the petition.
- three former editors of the New England Journal of Medicine
- Susan Reverby, PhD, who uncovered the Guatemalan syphilis scandal.
- a former editor of the British Medical Journal
- Vera Sharav, the founder of the Alliance for Human Research Protection
- and many other prominent bioethicists, health practitioners, academics, and community members (see the list here).
It’s important to bring attention to this issue to help prevent further cases like it. But equally important, the petition helps honor the memory of Dan Markingson, a real person, not just a symbol, whose family is hurting deeply today.
Previously on Biopolitical Times:
Made-to-Order Embryos: You Want to Sell What?!
Posted by Jessica Cussins on May 2nd, 2013
With political dividing lines carved deep into the collective consciousness, wading through the ethical minefield of embryo creation and destruction is a challenge. A recent New England Journal of Medicine (NEJM) article, “Made-to-Order Embryos for Sale — A Brave New World?” by I. Glenn Cohen and Eli Y. Adashi tackles the controversial issue of for-profit embryo creation. Possibly in an attempt to come out on a particular side of the political line, it sweeps what is truly novel about the practice under the rug.
The issue gained prominence last November, when the Los Angeles Times covered a Davis fertility clinic, California Conceptions, and their falsely named Donated Embryo Program. “Donated embryos” typically refer to the gift of embryos left over from a couple’s IVF procedure to another, infertile couple. The embryos belong to the people whose gametes created them, and they make the decision about whether, when and to whom they should be given.
What California Conceptions does is completely different: It creates batches of embryos from donated sperm and eggs, keeps them in an embryo bank on site, and divvies them up to sell to multiple parties for a profit. As the LA Times reporter put it, “The clinic, not the customer, controls the embryos, typically making babies for three or four patients while paying just once for the donors and the laboratory work.”
The news about California Conceptions’ program caused a surge of public outrage (well chronicled here by Dr. Craig Sweet, medical and practice director of Embryo Donation International.) Andrew Vorzimer, a Los Angeles fertility lawyer said,
Make no mistake, this is commodification. These are not donated embryos. Rather, they are embryos created from donors hand-selected by California Conceptions. It is one step removed from a mail order catalog. The only difference is that the product being sold is nascent human life.
Cohen and Adashi do not share this concern. They compare the practice of creating and selling embryos to the sale of gametes and to the use of gametes and embryos for stem cell research. They conclude that, “viewed through a legal and ethical lens, the concerns raised by this potentiality appear to be similar to those associated with widely accepted and more common reproductive technologies.”
But made-to-order embryos present a different set of questions. Reverting to the reasoning behind other technologies or practices does not address what is troubling about this.
For example, they make the argument that embryo destruction for the purpose of stem cell research raises concerns about “respect for personhood” comparable to those raised about “made-to-order” embryos. But this is only the case if you believe that embryos inherently have a claim to personhood. If you do not share this view, then the authors are leaving out the crucial difference: the embryos used for stem cell research will never become people. However, the creation of an embryo that is implanted into a woman (with a pregnancy-or-your-money-back guarantee) is about “respect for personhood” because it turns actual nascent life into a commodity, sold for a profit just like any other.
That is what is unique about this practice. But the NEJM article dismisses this and concludes that there is really only one important difference: “the lack of clear legal guidance as to the parentage of the embryos in question.”
“Parentage” is plainly not the real issue. As is the norm with gamete donation, the sperm and egg donors that were used to create the embryo would not be likely to have any claim to parenthood. The embryos will actually not have any kind of “parentage” at all. They will rather be owned by the fertility clinic, until a woman implants one into her womb.
California Conceptions markets their service as cheaper than using third-party eggs and IVF, and less time consuming than adoption. But it’s important to note that along with the heightened element of commodification, an additional imperative for “design” has seeped into their approach. To offset their costs, they have to produce embryos that multiple couples will find desirable as products. Cohen and Adashi may not find these “eugenic overtones” worrying, but acknowledging their existence is telling enough.
There is no federal law governing the sale of embryos and Cohen and Adashi note that it “appears to be legal in all but two states.” Indeed, this was the justification offered by Jennalee Ryan, who gained notoriety several years ago after advertising “the world’s First Human Embryo Bank” online. That turned out to be a failed business plan, run from her living room, but she explained, “You know how it works? If there is no law against it, it’s legal.”
It’s one thing for eccentric business entrepreneurs to try to exploit a poorly regulated system. The fact that established scholars have made the case that we should accept selling embryos as ethical is much more troubling.
Previously on Biopolitical Times:
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California Lawmakers Consider Paying Women to Provide Eggs for Research
Posted by Diane Tober on May 2nd, 2013
A bill being considered in the California legislature would allow researchers to pay women cash for their eggs. If passed, it would overturn established policies including guidelines from the National Academy of Sciences, the rules of the California stem cell agency, and a 2005 California law authored by then-state Senator Deborah Ortiz, known as a champion of women’s health and medical research. All these policies state that women who undergo egg retrieval for research can be compensated for their expenses, but not paid beyond that.
The new bill, AB 926, is sponsored by the American Society for Reproductive Medicine, which instigated the proposed legislation and is lobbying hard for it. Misleadingly worded to suggest that the bill promotes equity for women by offering “fair compensation,” the bill is really about trying to increase the number of eggs for research—where there is a perceived “shortage” of eggs and competition with the infertility industry—and has nothing to do with a concern for women. AB 926 in fact would have serious short-term and long-term health implications for women, especially college-age and low-income women, who may be enticed to put themselves at risk by selling their eggs out of financial need.
A fact sheet by the bill’s author, Assembly member Susan Bonilla, argues that women who provide eggs for research should be “treated equally to all other research subjects.” But these women are not at all like traditional research subjects in clinical trials. Their reactions to experimental drugs or procedures are not under study. Nor are the researchers in this situation investigating the health implications of egg retrieval. Instead, they are seeking raw material—women’s eggs—for their work.
Further, if researchers are paying thousands of dollars for each cycle of egg retrieval, they will likely be tempted to try to obtain as many as possible from each woman, and may consciously or sub-consciously make decisions from an economic position. Unfortunately, the more eggs retrieved in a procedure, the greater the risks to women’s health.
Although many women undergo egg retrieval for their own or other people’s fertility treatment, the procedure involves high doses of powerful hormones, some of them being used off label, and carries risks that are both significant and under-studied. Despite efforts by women’s health advocates, follow-up studies to determine the procedure’s effects on women are inadequate. Attempts to encourage assisted reproduction clinics to take part voluntarily in a registry of women who have undergone egg retrieval have mostly been ignored by the fertility industry. Without that information, women cannot possibly make an informed decision about the safety of providing eggs even for fertility treatment, let alone for research purposes.
AB 926 claims to be motivated by concerns for women’s equity and for advancing responsible medical research. Those are worthy goals. But, unfortunately, this bill undermines both.
Current status of the bill: AB 926 was passed by the Assembly Health Committee on April 16. It will go next either to the Appropriations Committee or straight to the Assembly floor. If approved by the Assembly, it will go to the Senate, where it will be voted on again.
• Letter to the members of the California State Assembly in opposition to AB926. Organizational signatories are Center for Genetics and Society, Alliance for Humane Biotechnology, Our Bodies Ourselves, Pro-Choice Alliance for Responsible Research, National Women’s Health Network, Council for Responsible Genetics, ETC Group, Movement Generation: Justice and Ecology Project, International Center for Technology Assessment, and We are Egg Donors: The world’s first self-advocacy group for egg donors. Individual signatories include medical doctors and legal scholars.
• “Which Comes First: The Woman or Her Eggs?,” Huffington Post, April 17, 2013
• “Should researchers pay for women's eggs?,” San Francisco Chronicle, April 4, 2013
What you can do: Write or call your California Assembly Members and Senators to oppose the bill. For more information, contact: dtober[AT]geneticsandsociety[DOT]org
Previously on Biopolitical Times: