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.

Hilary Freeman, whose brother Jeremy is deaf, writes in the [UK] Daily Mail:

I find the idea of deliberately choosing to have a deaf child so abhorrent.To me, it’s almost tantamount to child abuse. If we were talking about parents who were born without limbs demanding the right to give birth to a child without arms and legs, we would all be repulsed. But is this so different?

The limbless could argue that wheelchairs give them mobility, just as sign language offers a deaf person a means of communication, and they could say that they feel a sense of community with other people who use wheelchairs.

That doesn’t make it right to impose limblessness - or deafness - on a child who has no say in the matter.

… here’s a partial and unofficial transcript of the BBC interview with Tomato Lichy (left). The artist and designer is advocating for the right of deaf people to use reproductive technology to select for deaf children, which would be prohibited under the British government’s Human Fertilization and Embryology (HFE) bill, set to pass the House of Commons this spring. Reaction to the interview is here.

The interview by John Humphrys was first broadcast on the Today program on BBC Radio Four.

Humphrys: Do you not have an obligation to the child that may be born that that child should be able to hear if at all possible?

Lichy: If you see deafness as a disability, yes. But I don’t view deafness as a disability. I feel very positive about the language, about the culture and about the history of deaf people, and I’m very involved in the deaf community

And also, we already have a deaf child. If we say to her in the future we had a deaf embryo but the government told us we couldn’t have that one, how would she feel about it as a deaf person herself if the government had forced us to do that?

Humphreys: You may feel very positive about your deafness, and you are absolutely of course entitled to feel that, but surely you’re not entitled to make that decision on behalf of an unborn child?

Lichy: I’m nor religious myself, but people say to me: God created me as a deaf person, why would you oppose God? These children are created, these embryos are created, they should have equal chances in life. I mean really for me the core issue is that the government is saying that deaf people are not equal to hearing people.

Despite the fact that over time we’ve had more and more rights for disabled people, now they’re seeking to establish a legal principal that deaf people are inferior to hearing people. And there may be more laws once this gap opens. I think we have to stop that principle being established that deaf people are inferior to hearing people.

(more…)

From the [Newark] Star-Ledger:

The number of babies born with cystic fibrosis declined by half in Massachusetts after genetic screening started to identify carriers of the gene, suggesting similar declines may be happening across the nation, according to a recent report in the New England Journal of Medicine.

Genetic screening for CF presents unique ethical questions, particularly since many people with the disease live into adulthood. In the 1960s, life expectancy for people with CF was less than ten years, but advances in treatment have extended the mean life expectancy to 37 years. Prospects for children born today are better still.

Researchers say they cannot definitively explain the decline. Among the possibilities:

• – Couples who learn both carry the CF gene may decide not to have children, may turn to donor sperm or eggs or may use IVF so they can test embryos before implanting them; or
• – Pregnant women who learn they are CF carriers may test the fetus and have abortions if the test is positive.

The Cystic Fibrosis Foundation has called genetic testing a personal matter and says it is too early to know whether the Massachusetts decline is being duplicated in other parts of the country.