Wednesday, March 31, 2010

Patent protection for breast-cancer genes may be ending

As reported in the New York Times and elsewhere earlier this week, a federal district court judge has invalidated the patents held by test manufacturer Myriad Genetics on the BRCA1 and BRCA2 genes.

Mutations in these genes play a role in a small proportion of breast cancer cases -- that is, most breast cancer does not appear to have a strong genetic contribution, and genetic testing really makes sense only for women with a strong family history, as explained here -- but women who have one or more mutations have a substantially higher risk of developing breast and/or ovarian cancer. Men with these mutations stand an increased chance of getting prostate cancer and (in rare cases) breast cancer.

Myriad's most comprehensive test, which looks for mutations in both the BRCA1 and BRCA2 genes, costs more than $3,000. Critics charge that Myriad's monopoly and refusal to license the test has had negative effects on patient care, in that some women who may benefit from testing cannot afford it, and confirmatory testing is not available from another source.

The suit was brought by a group of patients, advocacy groups, scientific organizations, and the ACLU; it is almost certain to be appealed. The ruling contradicts more than 20 years' worth of cases that have allowed gene patenting. It will be interesting to see where this goes. GenomeWeb has a nice summary of the blogosphere's reaction here, and Genetic Future (as usual) has some smart commentary too.

UNESCO Call for Papers - Latin Bioethics

The journal Revista Redbio├ętica/UNESCO is a biannual publication that aspires to constitute a space for debate in the field of Latin American and Caribbean bioethics, by the spreading of regional perspectives and the treatment of their significant problems, included in the global bioethical frame. Original papers of theoretical or field research will be accepted for publication, and also reviews and updates, commentaries of books and papers, interviews and letters to the editor. Commentaries on news in the bioethics area will be welcome in the journal’s blog. The journal proposes a wide look on the field of bioethics including the areas of health (individual, public/global), biotechnological development dilemmas and their consequences in our region, genetics development and their derivations, environmental problems and economical and social development, and the cultural conflict between its usual economicist and reductionist focus and other holistic views historically present in our region such as those of the indigenous peoples.

Papers may be published in Spanish, Portuguese or English. Instructions for Authors here. Proposals should be sent to: revistaredbioetica@unesco.org.uy

Thursday, March 25, 2010

A lesson learned the hard way (update)


Nadya Suleman (a/k/a ‘Octomom’) shares the lessons she’s learned the hard way—with PETA helping her out, too.

Nadya Suleman is the infamous single California woman at the center of an ethical firestorm because of her use of assisted reproductive technologies to implant IVF embryos and carry 8 babies, all at once, to term.  In addition to this, she had 6 children at home, all brought into being with the help of IVF.  Her actions and the actions of the physician who implanted 6 embryos (2 split to become twins) prompted an outcry in the medical ethics community, prompting questions such as “How far does reproductive autonomy go?” and “How many children is too many?”

As I had noted in a blog entry here previously, there are multiple ethical considerations at play when an IVF specialist is approached by any woman and a ‘burden vs benefit’ analysis is employed. IEET Fellow George Dvorsky blogged: “By implanting 8 embryos in a mother predisposed to multiple births, they put her health at risk and they significantly increased the likelihood of her introducing a multiplicity of babies into a family that was already over-extended.” Bioethicist Art Caplan noted that “Society is getting stuck with the bill when she made this choice to be an infertility patient; It is more than her interests. It affects her kids and it affects the rest of us.”  The media attention to this case prompted medical ethicists to question the adequacy of ART (Assisted Reproductive Technologies) oversight: the American Society for Reproductive Medicine convened a conference to start a dialogue on this issue and a summary of discussion can be seen here and here. Fortunately, more than a year out, this case has turned out to be a real outlier and does not represent a trend in the ART industry.

And since then, Nadya Suleman has expressed deep regret at her decision—the costs have been extreme; the home in which she is living is being threatened with foreclosure and the impact of her decision is now coming down to bear heavily.  And as ticked off as everyone was at her and her IVF physician, no one I know thinks that her children should suffer more for her bad decision.  And, fortunately, most Americans (I would like to believe, anyway) have the heart to forgive someone who admits they have screwed up—and we love to hear stories about redemption.

And the redemption here is that the Associated Press has reported that Nadya Suleman (a/k/a ‘Octomom’) doesn’t want your pet to suffer the same fate:  PETA has negotiated a deal with the Ms. Suleman that allows them to post a PETA sign in her front yard trumping the value of spaying or neutering pets. The deal was in exchange for a one-time payment and a month’s worth of veggie burgers and veggie hot dogs for her and her children. The full story can be seen here.
Sounds like a win-win situation to me.

[Cross posted over at the IEET blog]

Wednesday, March 24, 2010

Women and Posthumanity: The future looks large and sexy

The body has a lot of change to go through on the path to post-humanity. There is a lot of room for improvement and enhancement. Even with all of these cool improvements and enhancements though, my cynical side emerges. While these would be great, are we giving ourselves too much credit that the choices we will make on the route to post-humanity will be practical? Isn’t society a little more vain that that? Seriously? The desire for youth and beauty is by no means a new phenomenon. However, I was caught off guard, just a bit when I was forwarded a video of an interview with Tom Ford, the fashion designer and director of the filmA Single Man.  In the video  Tom talks about women being posthuman and makes some good points in the interview all of which tied in to a paper I wrote on cosmetic surgery awhile back.

He mentions that breasts today do not bear any resemblance to what actual breasts look like. He is right, they try to look natural, but the key word is “try”. Several points that his statement make me think of is, if they are unnatural looking why do we want them to look natural? As a woman who has a genetic predisposition on the higher end of the size curve, I do not understand. The unnatural version of natural looks nothing like my own natural ones, even if we are the same cup size. I have friends who fall in to the same category that I do and talked to them about it and they agree. There is a level of insecurity, but it is not insecurity about size, but about gravity. The posthuman breasts go against the body’s natural inclination to succumb to gravitational pull, if you will. My friends and I however cannot pay to fight gravity; we are left to lesser forms of posthuman enhancements such as the push-up bra. This leads to my second point about Tom’s statement: actual breasts. Is the desirable path one where breasts do not bear any resemblance to natural breasts? Form over function. Breasts work, but do we still need them to work in the same way?

We have formula now, that while it can in no way match breast milk, it does work and many women use it. It is an alternative. Before you send me any hate comments, I breastfed all three of my children, not for a year, but I did. I did eventually switch over to formula. Regardless, if we want surreally attractive breasts, does the functionality need to remain the same or will sex and sexual appeal transition to be the exclusive function.

As adults, we can talk and think about these types of questions and issues, but what about the young girls. Tom Ford makes another point in the video that girls are seeing the adults with their unnatural breasts and think that they need to get their breasts done. He goes on to mention that we have lost touch with what a real breast actually looks like. Again, as adults that is one thing, as a young girl it’s another. In the adoption of the posthuman form are we taking critical examination of what images and ideas we are passing on to the next generation. Further examination though should include the messages conveyed and the impact of these messages on young girls. When thinking about the posthuman woman, the girls of today, how will their lives change by the choices made today. They could very possibly choose to go against the grain of the constructions of beautiful breasts and choose the au natural route. Insecurity about breast size is a facet of growing up that girls deal with. Plastic surgery enables them to address these insecurities, but what do they gain and what does it solve? Large unnatural breasts are not something a mother can pass on to her daughters naturally, it will require, at this point in time, a monetary investment of perpetuation within culture.

Tom points out that we are becoming our own art by manipulating our bodies and creating them the way we want them to look. He also says that it desexualizes, comparing these beautiful bodies to cars. Since they are so glossy, polished and an idealized form of perfection, they are too scary and not human. I would love to hear the answers to the questions he poses about after these surgeries of breast enhancement does it help ones sex life? Or is it intimidating? A body in its artistic form is admirable at a distance without touching. Not like a ball of clay where you want to get your hands dirty and really play with it intensely

Last night, as I was thinking about what I was going to say in the piece I turned on VH1, yes, I think it is a valuable source for pop culture insight. It did not fail me. The show that I turned on was “VH1News Presents: Plastic Surgery Obsession”. It fit in perfectly with what I was thinking and wanted to say, without the reference to post-humanism. The show is about the rise in popularity of plastic surgery, in and now out of Hollywood. The show supports both the new ideals of women’s bodies and that the younger generation is picking up these ideals. The fact that VH1 aired the show, despite a voyeuristic appeal that shows like this have, says something about what we want to see on TV. Finally, at the end of the episode the show touched on males and cosmetic surgery. Tom Ford did not talk about the men being posthuman in his interview, or at least the clip I heard, but VH1 talked about how tricky it was for men to undergo plastic surgery and come out of it looking “natural”. Does this mean that with women getting around 98% of the plastic surgeries they are more willing to transition to a posthuman form or is it just easier for them? What does this mean and how does this reflect on men? Are men going to, can they follow the same path as women? These are interesting questions to think about in addition to the critical examinations of the decisions of women. I look forward to hearing and thoughts.
[Cross-posted at my blog, The Yellow Canary]

A Live Webcast of Why So Few? Women in Science, Technology, Engineering, and Mathematics

In an era in which women are increasingly represented in medicine, law, and business, why do they continue to lag behind men in science, technology, engineering, and mathematics? Why So Few? Women in Science, Technology, Engineering, and Mathematics is a comprehensive report on the controversial issue of the continued underrepresentation of women in these fields.  The report was funded by a grant from the National Science Foundation, the AAUW Letitia Corum Memorial Fund, the AAUW Mooneen Lecce Giving Circle, and the AAUW Eleanor Roosevelt Fund.

Drawing upon a large and diverse body of research, AAUW’s report provides compelling evidence of environmental and social barriers — including unconscious gender bias, stereotypes, and the climate within college and university science and engineering departments — that continue to limit women’s participation and progress.

To register for the live webcast presentation and dialogue on the report on Thursday, March 25, 10–11:30 a.m. (EDT), go to WhySoFewWebcast.eventbrite.com.

Monday, March 22, 2010

Bioethicists Weigh In On the Healthcare Reform Vote (updated)

As the readers of this blog know, both myself and several of our bloggers have posted about universal health care coverage many, many times as an ethical and moral imperative. In the last year, my hopes (along with many other bioethicists, I'm sure ) of attaining universal coverage have gone up, down and sideways, like a roller-coaster ride, exhilarating and frightening, with emotions ranging from inspiration to resignation.   Now that the US House of Representative has finally passed a health reform bill, I've requested several bioethicists (and friends of the WBP) to share their thoughts on the ethical implications of the passage of this bill:

Art Caplan of UPenn:  "The passage of this bill, flaws and all, represents the elimination of the single greatest failure in American health care -- a lack of universal insurance coverage.  With this legislation in place America can finally say after decades of failure that it has honored its responsibility to create equal opportunity for every citizen."

 "I liked Nancy Pelosi’s comment that being female will no longer be considered a preexisting condition.

As I tried to say in my essay in the Connecting American Values to Health Reform collection, and reiterated in my Perspective in the New England Journal of Medicine, any serious and responsible health reform had to include universal participation along with means for insuring that we could be good stewards of our finite health care resources.

The “universal participation” piece was not fully accomplished, but very significant progress was made. Already today, however, news reports say that it will be under attack in several states. We will have to see whether it survives.

Perhaps the least appreciated aspect of the legislation is the set of strategies to make stewardship a reality (most commentators lump it under “cost containment”). Ezra Klein offers a very useful, brief summary here." 



Ruth Faden, Executive Director of Johns Hopkins Berman Institute of Bioethics and Philip Franklin Wagley Professor in Biomedical Ethics  says:  "This historic legislation for the first time enshrines a national commitment to guarantee that all of us in this country have meaningful access to appropriate medical care.  As a consequence, our society is now more just.  Our people have a greater prospect of securing for themselves and their families not only more health, but also more of everything that is essential to human well-being, including personal security, respect and self determination."


"Can one be happy and angry at the same time? The passage of the health care reform package is cause for rejoicing: it helps the poor and dispossessed—a disproportionate number of whom are women and children--gain access to health care. But it was achieved at the cost of both parties’ affirming in very loud tones that if a woman is pregnant unwillingly, she has recourse to abortion only if she can pay for it privately. That so much of the rhetoric surrounding reform was given over to underscoring what has been the case since the Hyde Amendment was passed many years ago, leaves me furiously frustrated."

I am waiting for several other bioethicists to respond to my inquiries, and will post them upon receipt.


As for my own feelings and thoughts, I think Nancy Giles of CBS Sunday Morning said it best:

"So I'm a progressive, and I don't consider this bill, or Dennis Kucinich (D-Ohio), or anyone who supports this legislation to be "selling out" because it doesn't go far enough. The bottom line is 30 million more people will get health care coverage, and that will save lives now. Voting "yes" gets a foot in the door.

Change takes serious effort, but progress happens. The fight for women's rights didn't end when we got the right to vote in 1920; the Lily Ledbetter Fair Pay Act signed just last year was another move toward true gender equality. Civil rights didn't end with the Emancipation Proclamation or the Voting Rights Act of 1964.

HR 4872 is a crucial first step, and can be amended and improved, but doing nothing is not an option. Health care should be a basic human right. And no one should be uninsured, or underinsured, or go broke paying their medical bills in the richest country in the world."  


Amen to that. 

[Cross-posted on IEET's blog]

Wednesday, March 10, 2010

Love’s Labour Lost: An act of desperation leads to a bad law


There is a saying in the law that “hard cases make bad law”.  This tragic story is one of those hard cases:  Last year in June, a 17 year old girl, seven months pregnant, was told by her boyfriend, the baby’s father, that he would leave her if she didn’t get rid of the unborn child.  So, the girl gives 21 year old Aaron Harrison $150 to beat her up and induce a miscarriage; it didn’t work – the baby survived, was born in August and, fortunately, adopted. The girl pled no contest to a second-degree felony count of criminal solicitation to commit murder, but the charges were later dropped as a judge ruled that under state law, she could not be held criminally liable.  Harrison is serving a sentence for up to 5 years for the “attempted killing of an unborn child.”
Utah’s legislative response:  Pass a bill that charges pregnant women and girls with murder for having miscarriages caused by "intentional or knowing" acts; so that if this happens again, the 17 year mother could face a prison sentence of 15 years to life. (The Text of the Bill can be accessed here.)
But no one is addressing the underlying problem  -- Sure, there is plenty of blame to go around – the pregnant minor, the baby’s father, the guy who agreed to beat her up – But there also lots of questions that need to be asked, such as “How could this have been prevented?”   Did the 17 year old or her boyfriend have sex education?  Did either of them have access to birth control?  Was the 17 year old aware that she had the right to a legal abortion?  Did her parents or the boy’s parents discuss alternatives with her?  Did ANYONE in the community discuss her options or offer her support? – Or did they figure that every seventeen year old was as mature as Ellen Page’s character in Juno and everything would be hunky dory? (They obviously haven’t watched Revolutionary Road)   As Lynn M. Paltrow, the executive director of National Advocates for Pregnant Women, commented, how this happened is being obscured because of the sole focus on the baby; she asks “Why would a young woman get to a point of such desperation that she would invite violence against herself?”
According to the Guttmacher Institute, which advocates for sexual and reproductive health in the United States, 93 percent of all Utah counties have no abortion provider. And I would venture to guess that sex education and access to birth control is fairly limited where this happened. (Somebody, please correct me if I’m wrong)
Planned Parenthood Melissa Bird is concerned that the language of “intentional or knowing” is still problematic, leaving suspicion open to any miscarriage: “What happens to women who are in abusive relationships?" she asks. "What happens if a woman threatens to leave the abuser, falls down the stairs and loses the baby? What if the abuser beats the woman and causes a miscarriage? Could he turn her in? Who would the prosecutor believe? What happens if a drug addict who’s trying to get clean loses her baby? Will she be brought up on murder charges?” (full text accessible here)
If there is anything that approaches a consensus in the US on this topic, it is that is prevention of unwanted pregnancy is much better than abortion.  This law doesn’t consider that OR address the underlying problem – it doesn’t help women have control over their reproductive systems or help the unborn; it penalizes the mother for being desperate.
[Cross-posted on IEET’s blog]


First report on WA Death with Dignity law

The Washington Department of Health last week released its report on the first year's experience with the state's new Death with Dignity law. Of the 63 people dispensed lethal medication between March and December 2009, 36 died after ingesting it. Another 7 died of other causes.

Some who opposed the law expressed concern that women may be disproportional users -- not necessarily out of their own deeply felt desire to die, but out of a sense of not wanting to burden their loved ones with their care. The stats reported by the DOH don't appear to bear this out: only 45% of the people who received medication under the law and died (either from the medication or otherwise) were women.

Local media have run a number of human-interest stories about folks' experience with the law, mainly in the vein of applauding its success or reporting the difficulties some people experienced in trying to use the law.

More information about Washington State's law is available here.