Whose Biotech Is It, Anyway?

Americans reject moral micromanagement of lifesaving innovations


It shouldn't be too much of a surprise that Americans are strongly in favor of healthy babies—even when they come with the help of advanced biotech diagnostic tests. But given the tenor of attacks on such techniques from a wide swath of the ideological spectrum and worldwide government restrictions on their free use, it is big, and good, news that Americans overwhelmingly welcome the use of biotech to help ensure the birth of a thriving next generation.

A new report from Johns Hopkins University's Genetics and Public Policy Center surveys the landscape of American opinion regarding such tests and finds that 70 percent of Americans think it's OK to screen embryos for disease genes in order to avoid giving birth to a child with a life-threatening illness.

The same percentage believes it's morally appropriate to test embryos for immunological matches to provide cells to help a sick sibling. Furthermore, nearly 60 percent approved of pre-implantation genetic diagnosis (PGD) to discover whether embryos are carrying genes for adult onset diseases like cancer or Alzheimer's disease. A majority of Americans remain leery of testing embryos to determine their sex or to detect traits such as intelligence and physical strength.

Not surprisingly, the study discovered that Fundamentalist or Evangelical Christians were least supportive of using these technologies for any reason—although even a majority of that group favored testing embryos for immunological matches with siblings. One fascinating finding was that a majority of Roman Catholics were in favor of PGD to test embryos for disease genes, sibling immuno-compatibility, and the presence of adult onset disease genes. This even though Catholic dogma, to put it mildly, frowns on assisted reproductive techniques.

But Americans are not blithely unconcerned with the potential ethical dilemmas PGD could pose. In the Center's poll, four-fifths of respondents worried that PGD would increase discrimination against the disabled; two-thirds were concerned that it would bring about an imbalance in the sexes; and 70 percent agreed or strongly agreed that advances in PGD will lead to treating children like products.

One might think, with ethical concerns like these, that the majority of Americans would like the government to step in and regulate new reproductive technologies. After all, this is already done in other countries. Austria, Germany, Ireland, and Switzerland completely outlaw PGD for any reason, on moral grounds. Britain has established a Human Fertilisation and Embryology Authority (HFEA) that rules not only on the safety and efficacy of new techniques, but also on their moral acceptability.

Such governments' efforts don't help their citizens. Consider the case of the Whitaker family from Sheffield, England, to see just how dangerous it is to allow a government agency to interfere in a family's reproductive decisions. In 2002, Michelle and Jayson Whitaker asked the HFEA for permission to use in vitro fertilization and PGD to produce a tissue-matched sibling for their son Charlie, who suffers from a rare anemia. That disease caused him to need a blood transfusion every three weeks. The HFEA refused, calling the procedure "unlawful and unethical," ruling that tissue matching is not a sufficient reason to attempt embryo selection. Desperate, the Whitakers came to the United States, where PGD is still legal. In June 2003, Michelle Whitaker gave birth to James, whose umbilical cord stem cells are immunologically compatible with Charlie's. The stem cells have now been transplanted. His doctors report that Charlie's bone marrow looks normal and he appears to be cured. Please keep in mind that taking stem cells from James' umbilicus in no way endangered or harmed him.

HFEA's refusal was not based on safety or efficacy, but on the moral opinions of the Authority's governing panel. Such a regulatory authority necessarily turns differences over morality into win/lose propositions, with minority views—and rights—overridden by the majority.

Although three-quarters of those in the Johns Hopkins survey strongly agreed that "technology will inevitably lead to genetic enhancement and designer babies," Americans do not want the government to stop this (from one perspective) baleful trend. While they favor regulations to ensure the safety and efficacy of the new technologies, 70 percent opposed government intrusion into their private reproductive decisions. Sixty-two percent opposed government PGD regulation on the basis of "ethics and morality. Americans are apparently, and rightly, more afraid of government interference than they are of designer babies.

To the extent that new biotechnologies need regulation, agencies should be limited to deciding, as they have traditionally done, only questions about safety and efficacy. Regulatory agencies also have an important role in protecting research subjects and patients from force and fraud by imposing informed consent requirements on researchers. But when people of good will deeply disagree on moral issues that don't involve the prevention of force or fraud, it is not appropriate to submit their disagreement to a panel of political appointees.

The genius of a liberal society is that its citizens have wide scope to pursue their own visions of the good without excessive hindrance by their fellow citizens. As the Johns Hopkins report shows, Americans, when permitted to choose, still honor the free expression of moral diversity.