Legal Voice Receives Bioethics Grant Award

Over the last two years, the Women’s Bioethics Project has closely collaborated with Legal Voice on a number of bioethics-related projects including hosting a bioethics panel on commercial surrogacy, developing a board presentation on reproductive technologies, and drafting provisions of the 2010 Washington State commercial surrogacy legislation to ensure reproductive justice for all. Today, the Women's Bioethics Project and the Tides Center are awarding Legal Voice an unrestricted grant in the amount of $3,000 to support their legal and policy work around the bioethical issues of commercial surrogacy, reproductive technologies and reproductive justice. Congratulations to Legal Voice Executive Director Lisa M. Stone and lead attorney Sara L. Ainsworth for your leadership on these critical issues.

GeneticsWatch

Creating Life and Curing Blindness

May 21, 2010

Tags: Venter, DNA, creating life, genome, American Society of Gene and Cell Therapy, gene therapy, blindness

I’ve been at the American Society of Gene and Cell Therapy annual meeting this week, garnering tales for my book, tentatively entitled “The Forever Fix.” It is largely the story of 9-year-old Corey Haas, who was on his way to certain blindness when gene therapy performed at the University of Pennsylvania in September 2008

WBP Awards Grant to IJFAB

The Women’s Bioethics Project (WBP) today announced it has awarded a $4,000 grant to the International Journal of Feminist Approaches to Bioethics. The grant award recognizes the outstanding quality of the content in IJFAB, as well as the importance of its mission to bioethics, social justice and health policy in a global context. The funding will be used to underwrite activities that promote IJFAB and serve the aim of increasing and extending its readership beyond academia and bioethics. Part of the grant will underwrite a reception promoting IJFAB at the meetings of the 10th World Congress of Bioethics in Singapore, July, 2010. Congratulations to IJFAB editor Mary C. Rawlinson and her entire team.

DTC genetic testing: Caveat Emptor

I met Cynthia in a van from the airport, headed to the annual meeting of Family Tree DNA (familytreedna.com), where I was to speak about genetic testing. A beautiful blonde who looked decades younger than her 60 years, she’d led a painful life, with type 1 diabetes since childhood, just like her father, brother, and grandfather. The family, so they thought, was 100% European, mostly Polish.

My talk did not go over well. Genetic testing companies and their customers do not like to hear that a geneticist thinks their tests should be regulated, for reasons of both privacy and accuracy.

Cynthia, intrigued despite my warnings, sent off a spit sample to 23andme (23andme.com), to learn about her ancestry. She got that, and more – health information, including a “lower than average” risk of developing diabetes. deCODE Genetics (http://www.decodeme.com/) gave her the same answer. Ditto her brother.

But her brother’s Y chromosome held an explanation. About 1200 years ago, a Korean man and at least two Chinese men dropped a bit of DNA into the family. So when Cynthia went back to 23andme and recalculated, entering “Asian” instead of “European,” her diabetes risk shot up to 90%.

So it looks like ancestry testing helped get this family on the right track. But another way to look at it is that the health-related tests are simply not precise enough.

This past week “direct-to-consumer” genetic testing took a hit, and it’s about time. First the Walgreen’s near-fiasco of off-the-shelf direct-to-consumer genetic tests, then a white paper from the American Society of Human Genetics calling for oversight of ancestry testing.    To top that off, I got a call from a writer for a popular psychology magazine asking me for a “sound bite.” A sound bite? Genetic testing isn’t quite that simple.

Genetic tests for well-studied mutations, delivered by a genetic counselor or physician, in person, are fine. But the genetic “associations” gleaned from population data, although useful in research, often cannot reveal much of anything about an individual – such as Cynthia.

Caveat emptor. 

[cross-posted from Ricki Lewis' blog, GeneticsWatch.]

A Bioethical Perspective on Oklahoma’s New Abortion Law

The percentage of college educated Americans who support legal abortion seems to have reached a new low among women under thirty and among the population as a whole,  so it should be no surprise that states are passing laws to restrict safe abortions. Before performing any abortion Oklahoma’s new 2010 law requires that the doctor do an ultrasound and describe to the woman the dimensions and gestational age of the embryo, cardiac activity if any, and appearance of external and internal structures.  A vaginal transducer must be used when doing so will display the embryo more clearly than an abdominal transducer.  Oklahoma’s law thus requires doctors to perform an ultrasound that is not medically indicated and likely to be invasive. In this era of skyrocketing medical costs and overutilization of services the new law mandates more of the same while leaving the burden of payment to the women themselves.

U.S. law requires that informed consent be obtained for treatments and diagnostic tests. This means that accurate and relevant information must be disclosed to patients. If current standards of disclosure and informed consent apply then the description of the fetus must include evidence about embryology including clinical and scientific uncertainty about when consciousness, thoughts, sensations, and life begin. This is more than some of the other commentators who are in favor of the law are advocating. Providing abortion without truthful disclosure and informed consent violates existing laws, threatens the doctor-patient relationship, and jeopardizes medical professionalism.  Mandating ultrasound, especially with out disclosing all the information -- especially where the law protects the doctor against deliberate failure to disclose --  means ignoring the need to obtain informed consent. One wonders how such a poorly crafted law ever reached the legislature. Indeed, as a result of legal challenges to the new law an Oklahoma judge has just granted a slight reprieve by delaying implementation for 45 days. 

[Guest blogging this week is Cheryl Cox Macpherson, Ph.D., Professor and the Chair of Bioethics Center at St George's University School of Medicine (SGU) in Grenada where she enjoys teaching medical and graduate students from many nations and background.]