GMbryo

My final research paper is almost complete! I've been analyzing the public understanding of science in relationship to the disposition of supernumerary cryopreserved embryos after fertility treatment (what people will do with their excess embryos after they conceive: dispose, donate to another couple, donate to science or store indefinitely). What I have found is that most people we've talked to don't understand science well. At all. I found this too in an early study, about eight years ago, when I conducted interviews to see how well people understood genetic modification. This makes the new genetically modified embryo report doubly interesting.

The curiosity lies with the almost visceral reaction I have read in response to the work, whereby individuals automatically jump to "designer baby", "super race" and eugenics arguments rather than looking through their rosy lenses to see what this could mean medically. The reported genetic modification of the embryo by a team of scientists from Cornell University entailed the addition of just one gene, "intended merely to let scientists better study embryo development; the embryo itself was already damaged beyond repair. They weren't going to implant it in a woman; they wouldn't use the technique on an embryo destined for implantation; and they certainly wouldn't start mucking around with any other genes" reports Brandon Keim of Wired. I find it interesting that we tend to dismiss that this is a technology which will potentially be used to correct for genetic abnormalities like hemophilia, cystic fibrosis and even cancer in favor of discussions of very advanced science (fiction-type) scenarios. While acknowledging the risks, oversight seems the key to keeping research from running down the scifi alleyway.

Stay tuned to see where this leads Great Britain's Human Fertilisation and Embryology Bill which is having its second round in Parliament this week. The bill, if passed, will make it legal to create GM embryos in Britain.

Welcome GINA!

Good news: On May 1st the House passed the Genetic Information Nondiscrimination Act (GINA) by a vote of 414 to 1. The act will protect Americans against discrimination based on their genetic information. This will apply to both health insurance and employment. The legislation has been debated in Congress for the past 13 years, so most individuals with genetic diseases and their families -- especially those parents of children with genetic illnesses -- are celebrating. This bill, additionally supported by NIH National Human Genome Research Institute, will also allow for continuation of biomedical research by eliminating the possibility for genetic discrimination. And, yes, this legislation is supported by George Bush who will sign it into law tomorrow.

This issue was brought to my attention by Jen, blogger and super-active alpha1 mom. Alpha1 refers to Alpha 1-antitrypsin (A1AT) deficiency, which is a not-so-rare genetic disease. A1AT is a protein produced by the liver and its function is to protect the lungs from the enzyme neutrophil elastase (NE). When the body is deficient in its production of A1AT, the NE, a protective enzyme that will normally remove old cells or bacteria, can damage healthy lung tissue. People with the deficiency will often develop emphysema. Other common diagnoses include COPD , asthma, chronic bronchitis, bronchiectasis and more rarely cirrhosis of the liver or panniculitis. Alpha1 can be treated with augmentation therapy, drug therapy, or surgeries such as organ transplantation. You can find more clinical information about Alpha-1 here , here and genetic information here.

Vaccine Skepticism

I’ve had an on-going interest in the autism-vaccine debate in which parents opt-out of the measles, mumps, rubella (varicella, pertussis) vaccination series for their children. Of particular interest has been the case of Hannah Poling, the now nine-year-old diagnosed with a mitochondrial disorder that some believe was aggravated by a vaccine-induced fever that caused the child’s body to manifest autistic behaviors.

Earlier this week, an article in The Scientific American made the argument that the “genetic defect responsible for Poling’s condition is part of her nuclear DNA” rather than her mitochondrial DNA. Had the disorder been of the mitochondrial variety, the autistic features of the child would also have manifested themselves in the mother, as mitochondrial genes are carried in the egg. In this case, from the documents presented in the vaccine court, “the Polings did not make a case that deserved compensation,” this according to Dr. Salvatore DiMauro, a mitochondria expert at Columbia University.

That, in and of itself, raises some interesting questions, not the least of which involve autism as a set of traits rather than a disorder, how often these nuclear DNA disorders occur and are labeled as a manifestation of autistic traits, the implications for the vaccine court that awarded the Polings a settlement and what that decision means, symbolically, for those opting out of the vaccination series. With most experts in agreement that the underlying disorder would have been aggravated by any fever or infection, the relationship to the vaccination is a dubious one.

As the mother of a young child who did receive this series of vaccinations (and more to come - both children and vaccinations), living in a state where the ability to sign an exemption waiver for vaccinations is quite simple, working in health care where vaccinations seem to me to be obviously beneficial and socially responsible, and being presented with quite a significant number of parents in the area who choose not to vaccinate, of more general interest are the reasons why this link of autism to vaccinations or belief that vaccinations are of more danger than benefit has picked up such steam.

In my estimation, the argument, summed up in a comment made by one mother who was quoted in the NYT saying "I refuse to sacrifice my children for the greater good,” creates something of an ethical dilemma, not just for that parent to her child - in that the child is at a higher risk without the vaccinations - but for everyone else, and everyone else's children, who happen to come in contact with that child.

Both The Denialist and Respectful Insolence have insightful opinions on the subject.