Designer Babies?

Building Baby From the Genes Up

By Ronald M. Green
Sunday, April 13, 2008

The two British couples no doubt thought that their appeal for medical help in conceiving a child was entirely reasonable. Over several generations, many female members of their families had died of breast cancer. One or both spouses in each couple had probably inherited the genetic mutations for the disease, and they wanted to use in-vitro fertilization and preimplantation genetic diagnosis (PGD) to select only the healthy embryos for implantation. Their goal was to eradicate breast cancer from their family lines once and for all.

In the United States, this combination of reproductive and genetic medicine -- what one scientist has dubbed "reprogenetics" -- remains largely unregulated, but Britain has a formal agency, the Human Fertilization and Embryology Authority (HFEA), that must approve all requests for PGD. In July 2007, after considerable deliberation, the HFEA approved the procedure for both families. The concern was not about the use of PGD to avoid genetic disease, since embryo screening for serious disorders is commonplace now on both sides of the Atlantic. What troubled the HFEA was the fact that an embryo carrying the cancer mutation could go on to live for 40 or 50 years before ever developing cancer, and there was a chance it might never develop. Did this warrant selecting and discarding embryos? To its critics, the HFEA, in approving this request, crossed a bright line separating legitimate medical genetics from the quest for "the perfect baby."

Like it or not, that decision is a sign of things to come -- and not necessarily a bad sign. Since the completion of the Human Genome Project in 2003, our understanding of the genetic bases of human disease and non-disease traits has been growing almost exponentially. The National Institutes of Health has initiated a quest for the "$1,000 genome," a 10-year program to develop machines that could identify all the genetic letters in anyone's genome at low cost (it took more than $3 billion to sequence the first human genome). With this technology, which some believe may be just four or five years away, we could not only scan an individual's -- or embryo's -- genome, we could also rapidly compare thousands of people and pinpoint those DNA sequences or combinations that underlie the variations that contribute to our biological differences.

With knowledge comes power. If we understand the genetic causes of obesity, for example, we can intervene by means of embryo selection to produce a child with a reduced genetic likelihood of getting fat. Eventually, without discarding embryos at all, we could use gene-targeting techniques to tweak fetal DNA sequences. No child would have to face a lifetime of dieting or experience the health and cosmetic problems associated with obesity. The same is true for cognitive problems such as dyslexia. Geneticists have already identified some of the mutations that contribute to this disorder. Why should a child struggle with reading difficulties when we could alter the genes responsible for the problem?

Many people are horrified at the thought of such uses of genetics, seeing echoes of the 1997 science-fiction film "Gattaca," which depicted a world where parents choose their children's traits. Human weakness has been eliminated through genetic engineering, and the few parents who opt for a "natural" conception run the risk of producing offspring -- "invalids" or "degenerates" -- who become members of a despised underclass. Gattaca's world is clean and efficient, but its eugenic obsessions have all but extinguished human love and compassion.

These fears aren't limited to fiction. Over the past few years, many bioethicists have spoken out against genetic manipulations. The critics tend to voice at least four major concerns. First, they worry about the effect of genetic selection on parenting. Will our ability to choose our children's biological inheritance lead parents to replace unconditional love with a consumerist mentality that seeks perfection?

Second, they ask whether gene manipulations will diminish our freedom by making us creatures of our genes or our parents' whims. In his book "Enough," the techno-critic Bill McKibben asks: If I am a world-class runner, but my parents inserted the "Sweatworks2010 GenePack" in my genome, can I really feel pride in my accomplishments? Worse, if I refuse to use my costly genetic endowments, will I face relentless pressure to live up to my parents' expectations?

Third, many critics fear that reproductive genetics will widen our social divisions as the affluent "buy" more competitive abilities for their offspring. Will we eventually see "speciation," the emergence of two or more human populations so different that they no longer even breed with one another? Will we re-create the horrors of eugenics that led, in Europe, Asia and the United States, to the sterilization of tens of thousands of people declared to be "unfit" and that in Nazi Germany paved the way for the Holocaust?

Finally, some worry about the religious implications of this technology. Does it amount to a forbidden and prideful "playing God"?

To many, the answers to these questions are clear. Not long ago, when I asked a large class at Dartmouth Medical School whether they thought that we should move in the direction of human genetic engineering, more than 80 percent said no. This squares with public opinion polls that show a similar degree of opposition. Nevertheless, "babies by design" are probably in our future -- but I think that the critics' concerns may be less troublesome than they first appear.

Will critical scrutiny replace parental love? Not likely. Even today, parents who hope for a healthy child but have one born with disabilities tend to love that child ferociously. The very intensity of parental love is the best protection against its erosion by genetic technologies. Will a child somehow feel less free because parents have helped select his or her traits? The fact is that a child is already remarkably influenced by the genes she inherits. The difference is that we haven't taken control of the process. Yet.

Knowing more about our genes may actually increase our freedom by helping us understand the biological obstacles -- and opportunities -- we have to work with. Take the case of Tiger Woods. His father, Earl, is said to have handed him a golf club when he was still in the playpen. Earl probably also gave Tiger the genes for some of the traits that help make him a champion golfer. Genes and upbringing worked together to inspire excellence. Does Tiger feel less free because of his inherited abilities? Did he feel pressured by his parents? I doubt it. Of course, his story could have gone the other way, with overbearing parents forcing a child into their mold. But the problem in that case wouldn't be genetics, but bad parenting.

Granted, the social effects of reproductive genetics are worrisome. The risks of producing a "genobility," genetic overlords ruling a vast genetic underclass, are real. But genetics could also become a tool for reducing the class divide. Will we see the day when perhaps all youngsters are genetically vaccinated against dyslexia? And how might this contribute to everyone's social betterment?

As for the question of intruding on God's domain, the answer is less clear than the critics believe. The use of genetic medicine to cure or prevent disease is widely accepted by religious traditions, even those that oppose discarding embryos. Speaking in 1982 at the Pontifical Academy of Sciences, Pope John Paul II observed that modern biological research "can ameliorate the condition of those who are affected by chromosomic diseases," and he lauded this as helping to cure "the smallest and weakest of human beings . . . during their intrauterine life or in the period immediately after birth." For Catholicism and some other traditions, it is one thing to cure disease, but another to create children who are faster runners, longer-lived or smarter.

But why should we think that the human genome is a once-and-for-all-finished, untamperable product? All of the biblically derived faiths permit human beings to improve on nature using technology, from agriculture to aviation. Why not improve our genome? I have no doubt that most people considering these questions for the first time are certain that human genetic improvement is a bad idea, but I'd like to shake up that certainty.

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."

Genetically Modified Humans? No Thanks.

By Richard Hayes
Tuesday, April 15, 2008

In an essay in Sunday's Outlook section, Dartmouth ethics professor Ronald Green asks us to consider a neo-eugenic future of "designer babies," with parents assembling their children quite literally from genes selected from a catalogue. Distancing himself from the compulsory, state-sponsored eugenics that darkened the first half of the last century, Green instead celebrates the advent of a libertarian, consumer-driven eugenics motivated by the free play of human desire, technology and markets. He argues that this vision of the human future is desirable and very likely inevitable.

To put it mildly: I disagree. Granted, new human genetic technologies have real potential to help prevent or cure many terrible diseases, and I support research directed towards that end. But these same technologies also have the potential for real harm. If misapplied, they would exacerbate existing inequalities and reinforce existing modes of discrimination. If more widely abused, they could undermine the foundations of civil and human rights. In the worst case, they could undermine our experience of being part of a single human community with a common human future.

Once we begin genetically modifying our children, where do we stop? If it's acceptable to modify one gene, why not two, or 20 or 200? At what point do children become artifacts designed to someone's specifications rather than members of a family to be nurtured?

Given what we know about human nature, the development and commercial marketing of human genetic modification would likely spark a techno-eugenic rat-race. Even parents opposed to manipulating their children's genes would feel compelled to participate in this race, lest their offspring be left behind.

Green proposes that eugenic technologies could be used to reduce "the class divide." But nowhere in his essay does he suggest how such a proposal might ever be made practicable in the real world.

The danger of genetic misuse is equally threatening at the international level. What happens when some rogue country announces an ambitious program to "improve the genetic stock" of its citizens? In a world still barely able to contain the forces of nationalism, ethnocentrism and militarism, the last thing we need to worry about is a high-tech eugenic arms race.

In his essay, Green doesn't distinguish clearly between different uses of genetic technology -- and the distinctions are critical. It's one thing to enable a couple to avoid passing on a devastating genetic condition, such as Tay-Sachs. But it's a different thing altogether to create children with a host of "enhanced" athletic, cosmetic and cognitive traits that could be passed to their own children, who in turn could further genetically modify their children, who in turn... you get the picture. It's this second use of gene technology (the technical term is "heritable genetic enhancement") that Green most fervently wants us to embrace.

In this position, Green is well outside the growing national and international consensus on the proper use of human genetic science and technology. To his credit, he acknowledges that 80 percent of the medical school students he surveyed said they were against such forms of human genetic engineering, and that public opinion polls show equally dramatic opposition. He could have noted, as well, that nearly 40 countries -- including Brazil, Canada, France, Germany, India, Japan, and South Africa -- have adopted socially responsible policies regulating the new human genetic technologies. They allow genetic research (including stem cell research) for medical applications, but prohibit its use for heritable genetic modification and reproductive human cloning.

In the face of this consensus, Green blithely announces his confidence that humanity "can and will" incorporate heritable genetic enhancement into the "ongoing human adventure."

Well, it's certainly possible. Our desires for good looks, good brains, wealth and long lives, for ourselves and for our children, are strong and enduring. If the gene-tech entrepreneurs are able to convince us that we can satisfy these desires by buying into genetic modification, perhaps we'll bite. Green certainly seems eager to encourage us to do so.

But he would be wise to listen to what medical students, the great majority of Americans and the international community appear to be saying: We want all these things, yes, and genetic technology might help us attain them, but we don't want to run the huge risks to the human community and the human future that would come with altering the genetic basis of our common human nature.

Richard Hayes is executive director of the Center for Genetics and Society.

I don't object to the creation of better garage doors and toothpastes. But I do keep on distinguishing human beings, and especially babies, from wares one can cataloguize. Must I really explain that?

What is a "better" human?
What do the genetic engineers as the creators of a "better" human and the orderers of ameliorated babies à la catalogue think is a "better" human?
Will there be a warranty of quality of the catalogue babies? (Of course!) Will there be a right to return unsatisfactory products? (Of course! That's the rule of the marketplace's play.)
Will the fact of being a "better" human (being created eugenically) be certified (answer: of course!), and will holding such a certificate ground social privileges? Will a new class system develop then (in addition to the fact that the spending power one must have to order babies à la catalogue is of course a class-specific attribute)?

I can't imagine anybody would think that the politics would keep its nose out of this "play". Ring any bells? Heinrich Himmler would have seized the new eugenic means enthusiastically. Nothing else would have met the National Socialist "plan to breed an Aryan master race of blonde-haired, blue-eyed babies for the 1,000-year Reich" better:

The SS race and settlement main office handles through its offices the racial selection of the SS coming generation, directs the choosing of mates of the SS men, and promotes the creation of child-rich families, valuable from a hereditary and biological point of view.
Der Soldatenfreund, 1943

The topic of Hayes's review on Green's essay is the latter's promotion of a "consumer-driven eugenics motivated by the free play of human desire, technology and markets". The essential passages are:

neo-eugenic future of "designer babies,"
parents assembling their children quite literally from genes selected from a catalogue

It's about this heritable genetic enhancement, not about the medical aspects of gene technology to which my comment relates. I expressly underline that Green's enthusiasm for designer babies, catalogue-gene-wise assembled by a consumer-driven eugenics, equates to the National Socialist enthusiasm for designer babies, breeded by copulations in Lebensborn facilities under official eugenic control.

Some say, "the lesson should be learned"; that appears to me to be a euphemistic, naive, pious hope in a world where smart bombs kill children under the shabby justifications of criminal governments of states the citizens of which want nothing more than to be amused to death.
Nota bene: The hightech homo sapiens is stuck for a proof of being more sapiens than his Stone Age ancestry.

See also this discussion.

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Johanna hat gesagt…

You must be the change you wish to see in the world.

- Mahatma Gandhi