Procreative Beneficience, PGD, and the Selecting of the “Best” Children
To what do we owe our children and to ourselves as parents? Do we have the right to demand perfection in both talents and health?
Asks Dr. Hsien-Hsien Lei, b5media.com Science Channel Editor, in a recent post on her Genetics and Heath blog entitled Ethics of Preimplantation Genetic Diagnosis. Preimplantation Genetic Diagnosis (PGD) involves screening embryos by taking a single cell from an early stage embryo; embyros with defective genes are discarded. (See also Hsien’s earliest posts, PGD and Embryonic Stem Cells and her exclusive series on a A Personal Experience with PGD.)
Hsien’s January 5th post on the ethics of PGD quotes from an interview with University of Pennsylvania bioethicist Vardit Ravitsky in Technology Review entitled Shaping Babies. A brief quote from the interview (I have italicized a few phrases for emphasis:
TR: One of the biggest fears with PGD is that parents will want to select embryos that are genetically predisposed to being superb athletes or good at math. Would it be wrong to do those kinds of tests?
VR: When you get to enhancement selection, such as choosing physical traits or personality traits, there’s this tension between the fear of eugenics on one hand and reproductive freedom on the other.
Some people argue that a new ethical principle is emerging: procreative beneficence, the responsibility to benefit future children as much as we can. If you can bring a child into this world with better genetic equipment, it is our ethical obligation to do so, just like providing medical care.
On the other end of the spectrum, people argue that this kind of testing will modify our relationship with our children. Until now we saw them as gifts. What we got was what we got. Once we try to control their identities, we’ll see them as commodities, a product that should meet a certain standard. If you bought genetic equipment to have an athlete, will you be upset if you get a musician?
And, if you “bought genetic equipment” to have a “normal” child who goes to school, attends college, gets married, gets a job, buys a house, has grandchildren, will you be upset if you get an autistic child who needs special education or homeschooling, gets a job stacking shelves when he finishes school, lives in a group home or with you, and who know what else?
I really do not know what lies ahead in the future for my son Charlie. I can say that, however difficult and even sad some moments have been in the past 9 1/2 years, I cannot imagine life without him. Just this evening as Jim, Charlie, and I were walking by Union Square in New York City, I said to my two best friends how lucky I am that I became a mother 9 1/2 years ago. Being Charlie’s mother—having the daunting responsibility of taking care of another life—has entirely changed my life, made me (as I have said before) a better person, enabled me to be myself more—-I never have so many good times as I do when Charlie is around, and Jim feels the same, too. Every day we spend with Charlie can have its tough moments, but there is always plenty of comedy and adventure, and happiness.
Back in June, I posted about a test to screen male embryos for couples with families with a history of autism; a team at the University College Hospital’s assisted conception unit in London has applied for a license for the procedure. I quote from my post, whose title was Designer babies (not autistic ones); my sentiments about PGD and autism remain the same.
This is not just the specter of a prenatal genetic test for autism.
It appears to be the real thing.
The Times Online article quotes Simone Aspis, parliamentary and campaigns worker for the British Council of Disabled People,
“Screening out autism would breed a fear that anyone who is different in any way will not be accepted. Screening for autism would create a society where only perfection is valued.”I know that I would be “severely suffering” without my lovely, “imperfect” to some but perfect to me, boy named Charlie—-and I believe the world would be more than severely lacking without him, and so many other autistic persons, too.
On PGD, go here to read Congratulations! It’s a (You Choose) Boy/Girl in USNews & World Report. Go here to an abstract on Procreative Beneficence: Why We Should Select the Best Children by Professor Julian Savulescu.
Related Stories
POSTED IN: Disability Rights, Family, Genetics, Health, Medicine, Science
8 opinions for Procreative Beneficience, PGD, and the Selecting of the “Best” Children
mcewen
Jan 7, 2007 at 1:25 am
I think that China might be having second thoughts about some of their choices, or at least the current generation of single men are.
And anyway, I already did, ’select the best children,’ by giving birth to them.
Cheers
Kristina Chew, PhD
Jan 7, 2007 at 1:47 am
I had read about that—-worries of a generation of Chinese men not being able to find a mate, due to the “one child” policy and the preference in China for sons.
I made one fine—best—selection, too.
natalia
Jan 7, 2007 at 12:18 pm
Happens the same way in India too. All those lonely Asian guys, it’s sad. I know some of them as internet-friends.
natalia
Jan 7, 2007 at 12:22 pm
PS: I didn’t mean that lonely Asian guys are any sadder than lonely Western guys, I just meant as a summary because that’s where the problem of imbalance of gender numbers (becos of selective abortion of girls) mainly seems to be happening.
Just out of curiosity, do you think western cultures would end up with a gender imbalance, too? Or “only” a neurodiversity imbalance?
influxus :: The future of nonspecific children
Jan 7, 2007 at 12:58 pm
[…] Via AutismVox we get Vardit Ravitsky giving an succinct summary of the way pre-implantation genetic diagnosis is aligned by the ethics of chance and choice: Some people argue that a new ethical principle is emerging: procreative beneficence, the responsibility to benefit future children as much as we can. If you can bring a child into this world with better genetic equipment, it is our ethical obligation to do so, just like providing medical care. […]
Kristina Chew, PhD
Jan 7, 2007 at 5:54 pm
Natalia, got your meaning—-though I have to wonder how it would be for a family in China with a child like Charlie.
Autism Vox
Jan 9, 2007 at 11:54 am
[…] reads a headline in today’s New York Times: Due to new, less invasive screening techniques—-an ultrasound exam that can detect whether or not a child might have Down Syndrome as early as eleven weeks into pregnancy—American College of Obstetricians and Gynecologists (ACOG) is recommending that all women who are expecting be screened. Previously, only women 35 and older have been routinely tested for chromosonal abnormalities in their fetuses. The new ulstrasound exam, a nuchal translucency test, measures the fluid that accumulates in the back of a fetus’ neck: There is a “strong association” between this thickening of the back of a fetus’ neck and Down Syndrome, and studies that use this measurement along with two blood tests have been shown to detect 82 to 87 percent of Down Syndrome cases. Having just posted on English professor Michael Bérubé’s book about Jamie, his son who has Down Syndrome, Life As We Know It: A Father, a Family, and an Exceptional Child (1998), I wanted to point out two quotations made in the New York Times article and then a passage from Bérubé’s book, all while keeping in mind my recent post on Procreative Beneficience, PGD, and the Selecting of the “Best” Children in light of the issue of […]
Gender Selection and Prenatal Genetic Testing
Feb 27, 2008 at 5:07 pm
[…] screen for autism in male embryos for couples with a family history of autism. The test would use Preimplantation Genetic Diagnosis (PGD), which screens embryos by taking a single cell from an early stage embryo; embryos with […]
Have an opinion? Leave a comment: