Living in the Biotech Century -- December 7, 2005

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Executive Director

Affirming the importance of kinship...

Tina Gibson

Justin Senk, 15, right, was the most recent half-sibling to surface in a group that now numbers five.

“Like most anonymous sperm donors, Donor 150 of the California Cryobank will probably never meet any of the offspring he fathered through sperm bank donations. There are at least four, according to the bank’s records, and perhaps many more, since the dozens of women who have bought Donor 150’s sperm are not required to report when they have a baby.

“But two of his genetic daughters, born to different mothers and living in different states, have been e-mailing and talking on the phone regularly since learning of each other’s existence last summer....

“The girls, Danielle Pagano, 16, and JoEllen Marsh, 15, connected through the Donor Sibling Registry, a Web site that is helping to open a new chapter in the oldest form of assisted reproductive technology. The three-year-old site allows parents and offspring to enter their contact information and search for others by sperm bank and donor number....

“For children who often feel severed from half of their biological identity, finding a sibling—or in some cases, a dozen—can feel like coming home. It can also make them even more curious about the anonymous father whose genes they carry. The registry especially welcomes donors who want to shed their anonymity, but the vast majority of the site’s 1,001 matches are between half-siblings.

“The popularity of the Donor Sibling Registry, many of its registrants say, speaks to the sustained power of biological ties at a time when it is becoming almost routine for women to bear children who do not share a partner’s DNA, or even their own....”

Buying and selling human body parts...

China Admits Prisoner Organ Sales

“China has broken its silence on the sale of executed prisoners’ organs to foreigners.

“For many years, the country has denied that such a trade existed. But Vice Health Minister Huang Jiefu has now acknowledged that the practice is widespread and has promised to tighten the rules.

“‘We want to push for regulations on organ transplants to standardise the management of the supply of organs from executed prisoners and tidy up the medical market,’ Mr Huang told Caijing magazine....

“Since 1993, China has performed 60,000 kidney transplants, 6000 liver transplants and 250 heart transplants.

“One reason is that transplants are big business. A liver costs almost $40,000 for Chinese patients, or about $55,000 for foreigners. A kidney costs $8000 for Chinese. Foreigners typically pay a premium, although the price is about 30 per cent lower than in many countries....”

Now there are questions about forged research results...

Hwang’s Team Won’t Retest Its Stem Cells for Validity

“Scientists on Hwang Woo-suk’s team reiterated yesterday that they would not retest the validity of their research on stem cells, saying previous tests conducted by private labs were full of scientific errors.

“‘Scientific errors in ‘PD Notebook’ were serious,’ Kang Sung-keun, Hwang’s close associate, told reporters, stating that the genetic information in most of the cells tested was impossible to read.

“A news magazine show ‘PD Notebook’ suggested that the cells may be fraudulent, saying one of the five customized stem cells provided to it by Hwang’s team did not match the original somatic cell taken from a patient.

“But ‘PD Notebook’ said the other four cells were impossible to read. Experts alleged the reason the cells were not readable was that they may have been contaminated by fixing fluid containing the cells....”

A host of serious ethical questions...

“New questions were raised yesterday over France’s pioneering face transplant operation when a leading medical ethics professor said the surgery had been conducted with undue haste, as it emerged that both the donor and the recipient of the skin graft had attempted suicide.

“The medical team that carried out the 15-hour operation eight days ago was accused of ignoring ethical questions in the bid to be first, and of using a rival doctor’s technique. The saga took a further twist when it became clear that the donor and the 38-year-old transplant patient had been involved in suicide attempts....”

“To some extent, the embrace by young adults of better living through chemistry is driven by familiarity....”

Young, Assured and Playing Pharmacist to Friends

Monica Almeida/The New York Times

“Nathan Tylutki arrived late in New York, tired but eager to go out dancing. When his friend Katherine K. offered him the Ritalin she had inherited from someone who had stopped taking his prescription, he popped two pills and stayed out all night.

“For the two college friends, now 25 and out in the working world, there was nothing remarkable about the transaction. A few weeks later, Katherine gave the tranquilizer Ativan to another friend who complained of feeling short of breath and panicky.

“The Ativan came from a former colleague who had traded it to her for the Vicodin that Katherine’s boyfriend had been prescribed by a dentist. The boyfriend did not mind, but he preferred that she not give away the Ambien she got from a doctor by exaggerating her sleeping problems. It helps him relax after a stressful day....

“For a sizable group of people in their 20’s and 30’s, deciding on their own what drugs to take—in particular, stimulants, antidepressants and other psychiatric medications—is becoming the norm....

“They trade unused prescription drugs, get medications without prescriptions from the Internet and, in some cases, lie to doctors to obtain medications that in their judgment they need....”

Promising umbilical cord stem cell research lacks support...

Umbilical Accord

“Four million babies are born in this country every year, bearing gifts of inestimable value. Foremost among these, of course, is the love they bring into the world and elicit from it. More practically, however, these infants bring with them something that we are learning has great potential to alleviate human suffering: the stem cells contained in the blood of their umbilical cords.

“For example, as reported in the peer-reviewed medical journal Cytotherapy (Vol. 7, 368-373), umbilical cord blood (UCB) stem cells have restored feeling and some mobility to a woman who had been paralyzed with a spinal cord injury for 19 years. While we must remember that one dramatically improved patient does not an efficacious treatment make, the potential for cord blood to treat paralysis was further boosted with the recent announcement that rats with spinal cord injury also showed moderate improvement after being treated with human UCB stem cells (Acta Neurochirurgica, Vol. 147, 985-992).

“That’s not all. In a study published in the New England Journal of Medicine (352:20, May 19, 2005), infants with Krabbe’s disease, a terrible illness that results in progressive neurological deterioration and death in early childhood, showed impressive improvement when treated before the onset of symptoms. UCB stem cells have also successfully treated sickle cell anemia. So far 67 human afflictions have been successfully treated with umbilical cord blood stem cells, and more may soon be added to the list....

“And there is even more good news about umbilical cord blood stem cells: Unlike embryonic stem cells, UCB stem cells don’t cause dangerous tumors. Moreover, they are easier to tissue-type to prevent rejection than are bone marrow stem cells. And here’s another big plus: This research is utterly uncontroversial. No embryos are being cloned. No embryos are being destroyed....”

The radical Voluntary Human Extinction Movement...

“‘We can’t be breeding right now,’ says Les Knight. ‘It’s obvious that the intentional creation of another [human being] by anyone anywhere can’t be justified today.’

“Knight is the founder of the Voluntary Human Extinction Movement, an informal network of people dedicated to phasing out the human race in the interest of the health of the Earth. Knight, whose convictions led him to get a vasectomy in the 1970s, when he was 25, believes that the human race is inherently dangerous to the planet and inevitably creates an unsustainable situation.

“‘As long as there’s one breeding couple,’ he says cheerfully, ‘we’re in danger of being right back here again. Wherever humans live, not much else lives. It isn’t that we’re evil and want to kill everything—it’s just how we live.’

“Knight’s position might sound extreme at first blush, but there’s an undeniable logic to it: Human activities—from development to travel, from farming to just turning on the lights at night—are damaging the biosphere. More people means more damage. So if fewer people means less destruction, wouldn’t no people at all be the best solution for the planet...?”

Family balancing...a euphemism for consumer eugenics...

Gender Selection a Reality, But Is It Ethical?

Matthew Mandelosi says he and his wife Beth didn’t think about the ethics of selecting their sons’ gender.

“Matthew and Beth Mandolesi told their doctor that they would be happy with a boy or a girl but wondered if there was a way to increase the odds that it would be a boy.

“The Mandolesi family is part of a growing trend called ‘family balancing’ that allows couples to choose their baby’s gender, fertility doctors around the country say.

“‘A few years ago I had a couple of clients asking every month; now it’s at least two or three a week asking seriously about it,’ said Dr. Kevin Winslow of the Florida Institute for Reproductive Medicine.

“There are three methods of gender selection. The cost, technology and price vary....”

“The real trouble with sex selection...”

Jack or Jill? The Era of Consumer-Driven Eugenics Has Begun

“There are things about one’s life and especially about one’s children that cannot be known in advance and to which it would be foolish to assume a right outcome or a wrong one. How, for example, could you possibly know whether you and your family would be better off having had a boy child and then a girl, or a girl first, or two girls or two boys? What would your standard for comparison be? Which child would you have given up in order to have had the imaginary right family? You might have thought you wanted a girl, and then gotten one not at all like the girl you expected-not gentle, not Barbie-doll loving, utterly unlike your childhood self. You might have thought that having one child of each sex was perfect, and then found that family harmony eluded you nonetheless. Certainly, the more precise your expectations of your children and the more convinced you are that those expectations can be met (indeed, that you deserve to have them met), the more disappointed you are likely to be. Without some humility in the face of the unknown and unknowable—without some fundamental willingness to accept and to love whatever child you get—parenthood would be a very different, and a lesser, thing....”

This article, which was published originally in The Atlantic Monthly, March 2002, is available at the website of the Center for Genetics and Society.

Worth considering...

From Designing Our Descendants

We can say, by way of summary, that, were we to undertake the project of designing our descendants, we should want them to be people who do not think the natural world infinitely malleable to their projects; who reckon from the outset with limits to their own knowledge of and control over the future; who respect the equal dignity of their fellows and do not seek to coopt others as means to their own (even if good) ends; who acknowledge even their own death, the ultimate of limits; who are prepared to subordinate their needs to the good of others; who are more disposed to seek wisdom than power; who know that the good is not finally at their own disposal; and who live in a manner that says to others, “It’s good that you exist.”

My argument has come at the question of designing our descendants in two stages. I first suggested that people who live as we do—who have accepted as useful the routinized practice of prenatal screening—are people who have no business attempting to reach out and shape future generations. But, second, I asked what kind of descendants we should seek to create if we were people fit to undertake such a task. If we are drawn to the description I have given in terms of the cardinal and the theological virtues, we should be able to see, from a quite different angle, why designing descendants is a project we ought not undertake. I said earlier that I took the inspiration for this idea from Alasdair MacIntyre, and I can do no better than repeat here the words with which he concluded his own exploration of the traits we should want our children to have.

If in designing our descendants we succeeded in designing people who possessed just those traits that I have described, . . . what we would have done is to design descendants whose virtues would be such that they would be quite unwilling in turn to design their descendants. We should in fact have brought our own project of designing descendants to an end.

It turns out then that my argument has immediate practical consequences. For if we conclude that the project of designing our descendants would, if successful, result in descendants who would reject that project, then it would clearly be better never to embark on our project at all. Otherwise we shall risk producing descendants who will be deeply ungrateful and aghast at the people—ourselves—who brought them into existence.

“Designing Our Descendants” was published in First Things (January 2001) and is available online. Gilbert Meilaender holds the Richard and Phyllis Duesenberg Chair in Christian Ethics at Valparaiso University and serves on the President’s Council on Bioethics.

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