From the [UK] Guardian, a special issue on the culture of deafness.

Among the featured articles:

I wouldn’t have minded if my baby had been born deaf, but the embryology bill suggests I should –  Rebecca Atkinson says the embryology bill currently before the House of Commons curtails the rights of deaf parents. The bill would prohibit the implantation of an embryo known to have deafness when other hearing ones are present. An excerpt:

… This is not about tweaking the genes of a hearing embryo, a technical impossibility. It’s about laying two potential children in embryonic form side by side and affording more right to life to the hearing one by making it illegal to issue preference to the deaf one … this is not about creating a hearing child and then making it deaf. It’s about not being able to give life and therefore equality to an embryo that is already deaf.

…as a deaf person I can’t help but feel slightly affronted that the bill affords more right to life to you the hearing reader, than me the deaf writer, were we to be lying side by side in embryonic form in a petri dish. Indeed, it makes it illegal to choose me over you.

(more…)

Writing in the New York Times Magazine, contributing writer Peggy Orenstein raises concerns over higher disability rates among children created through assisted reproduction. She says government oversight of reproductive technologies should be considered.

Orenstein finds evidence that male infertility treatments may result in children with higher rates of birth defects, learning disabilities and sterility. Further, she says the implantation of multiple embryos leads to higher rates of multiple births and complications: prematurity, lung impairments, cerebral palsy, and infant death.

… it’s easy to forget the disturbing questions about in vitro fertilization – its practices, ethics and impact on public health – that do remain and are left largely subject to a physician’s conscience and a patient’s desires. The trouble is, doctors who do I.V.F. are selling a product and their patients are so vulnerable, their experience with infertility so fraught, that they’re not always willing or even able to act in what seems like their own best interest.

Among the suggestions Orenstein raises: licensing of donor egg agencies, the creation of a national registry to track the long-term health of IVF-conceived children, and the formalization of guidelines for embryo transfer.

Orenstein is the author of “Waiting for Daisy.”

From CNN (video) , BBC, Reuters:

Advocates for deaf people maintain that the Human Fertilization and Embryology bill, currently under debate in Parliament, is discriminatory because it would prohibit deaf couples from using in vitro fertilization to deliberately select embryos with genetic deafness.

Artist Tomato Lichy (left) and his partner, theater director Paula Garfield, are both deaf, as is their daughter Molly. They say they want another child, and would like to use IVF to assure the child would share the family’s deafness. Lichy and Garfield reject the idea that deafness is a disability, and say disability is imposed upon them by society.

“If a law is passed and says that an embryo that is hearing has to be got rid of, how would you feel? That would be offensive,” says Garfield. “What if deaf people decided to get rid of all hearing babies? It’s the same the other way round.”

(more…)

Ronald M. Green, writing in the Washington Post, foresees a future in which assisted reproductive technology routinely allows people to prevent the occurrence of genetic disease and disability in their children. He predicts that people will be able to use genetic technologies to avoid having children who might have cancer, obesity or dyslexia, among other things, and rejects criticism that these developments could lead to a society in which eugenics replaces human love and compassion.

Genomic science is racing toward a future in which foreseeable improvements include reduced susceptibility to a host of diseases, increased life span, better cognitive functioning and maybe even cosmetic enhancements such as whiter, straighter teeth. Yes, genetic orthodontics may be in our future. The challenge is to see that we don’t also unleash the demons of discrimination and oppression. Although I acknowledge the risks, I believe that we can and will incorporate gene technology into the ongoing human adventure.

Ronald M. Green is a professor of ethics at Dartmouth College. His most recent book is “Babies by Design: The Ethics of Genetic Choice.”

Yes, it’s still World Autism Awareness Day, and the hits just keep on coming. Back at CNN …

Sperm donor linked to autism. CNN picks up the ‘Donor X’ story that ran earlier in ‘O’ Magazine. When Fordham University professor Gwenyth Jackaway’s son Dylan started showing signs of autism, she tracked down his sperm donor. Jackaway found out that ‘Donor X’ had also fathered other children with autism. Scientists say they do not yet have methods for screening sperm for genes that cause autism.

Celebrity author and former playmate Jenny McCarthy and actor Jim Carrey have posted a column on the CNN site saying that vaccines play a “major role” in causing autism among children. They say McCarthy’s son Evan has “recovered” from autism thanks to a gluten-free, casein-free diet, vitamin supplements and “detox of metals and anti-fungals for yeast overgrowth…”

We wish to state, very clearly, that we are not against all vaccines, but we do believe there is strong evidence to suggest that some of the ingredients may be hazardous and that our children are being given too many, too soon!

By Emily Bazelon in O the Oprah magazine:

(Newstands only; article not available on the magazine’s website.)

After her son was diagnosed with Asperger’s syndrome, Gwenyth Jackaway went on the Internet in search of other women who had used the same anonymous sperm donor. She has found seven other mothers. Among them they have eleven children and one on the way. Three have diagnoses on the autism spectrum, a rate that is about 45 times higher than the chances for the general population. Bazelon spends time with the women and documents their lives.

Is the bank that sold Donor X’s sperm at fault for failing to catch the genetic defect he appears to carry? (None of the mothers of affected children has family members with autism.) No history of the disorder showed up on the three-generation medical profile that Donor X filled out for the California Cryobank. The bank conducts DNA testing for conditions like Tay-Sachs, cystic fibrosis and sickle-cell anemia, which are primarily caused by a single mutant gene.

Autism is a different story. The disorder clearly has a hereditary component (if one identical twin has it, the odds the other will, too, are between 60 and 90 percent), “but there is not a genetic test for autism because we have not yet identified enough genes that might cause it,” says Peter Szatmari, MD, a veteran autism researcher and psychiatry professor at McMaster University in Hamilton, Ontario.

Writing in the New York Times’ Modern Love column, Kayla Rachlin Small describes the joy and anguish she felt while pursuing an intimate relationship with a man who has cystic fibrosis, a condition she shares. An excerpt:

I didn’t throw myself at Thomas in hopes of unconditional acceptance; I did it out of defiance. There was the expectation that we would choose safety over intimacy. There was the probability that had we [been] born a few years earlier, neither of us would have grown old enough to have sex. And then the ultimate snub: the possibility of reproduction.

There we were, manifestations of what people fear for their babies. If we were to conceive, our child would without question have cystic fibrosis. At times, my ambivalence about such an outcome was overcome by my longing for that baby. I wanted to provoke whispers of “How tragic” and “They should have known better” – then prove those judgments wrong.

I envisioned our child, head held proudly, endowed with a sense of O.K.-ness that our own parents hadn’t been able to give us. The three of us were all right, disease included.

So when Thomas climbed off my bed and reached for the packet in his coat pocket, I told him no, we didn’t need that.