Genetic testing and other technologies that offer a “window on the womb” are allowing parents to know more about their prospective offspring than ever before. Is that good?
By Phil Berardelli
It is a wet, nearly freezing afternoon in early March. Dr. Glenn McGee, assistant professor at Penn’s Center for Bioethics, maneuvers his purple Acura through midday traffic along slick streets in Center City Philadelphia. He is on his way to do a live interview with the MSNBC cable network on the ethical aspects of cloning. It is perhaps the 30th interview on the topic McGee has given in the few days since the shocking announcement that scientists in England had cloned a sheep from a single adult cell, so he’s showing no signs of stage fright. He also doesn’t bother to rehearse. Instead, between nonchalantly dodging errant taxis and buses, he continues an animated discussion with me that had begun an hour earlier in his office, only to be interrupted by the MSNBC request. He is explaining what he sees as the primary task of bioethics, a field that emerged on its own only about 20 years ago, but now is exploding due to rapid advances in medical technology, resulting ethical questions raised by new procedures, and the insatiable demands of the media to obtain ready answers to those questions.
McGee,
29, is considered the most articulate and thoughtful of his generation
of bioethicists by many older colleagues. Dr. Margaret Battin, professor
of philosophy at the University of Utah, calls him “one of the
highest-energy folks in his field” — a quality that is very useful for
someone whose work is often as much public as scholarly. His reputation
is remarkable, given the brief timespan of his career. At 26, McGee had
already finished his Ph.D. in American philosophy at Vanderbilt, passing
his qualifying examinations before he even began graduate school and
earning his master’s and doctoral degrees in three years. His teacher at
Vanderbilt, Dr. John Lachs, describes him as “a phenomenon” and “a
storm of exciting ideas and activities who is still a nice guy.”
By
1995, McGee was teaching philosophy at the University of Massachusetts,
by all accounts a rising star, but somehow the conventional route
wasn’t satisfying. “Don’t get me wrong,” he says. “I liked teaching
undergraduate courses in philosophy. But when I studied John Dewey and
pragmatism in graduate school, the main lesson I took home was that
philosophy works best when the eternal questions are connected to
everyday practice.” When he heard that Dr. Arthur Caplan, America’s
best-known bioethicist and a pioneer in philosophy of medicine, was
setting up a new Center for Bioethics at Penn’s School of Medicine, he
resolved to jump in. “My letter said something like ‘Dear Dr. Caplan,
you would be nuts not to talk with me about the center.'”
Caplan
was a little taken aback by the brashness at first, but he soon
reconsidered. “I thought, ‘Darn, I guess I really do want to interview
this guy,'” he says. “And Glenn was right. His fit is perfect, including
his ambition and drive.”
McGee explains that what clinched the deal for him was Caplan’s interdisciplinary approach to bioethics. Caplan says it was McGee’s pragmatism and keen interest in genetics. Whatever — there was synergy. Their unconventional first encounter quickly evolved into mutual respect. “I have learned so much from him about mentorship, public service, and the discipline,” McGee says. He also was impressed with the Center’s team, which includes specialists in history, sociology of science and medicine, economics, and health policy. “It’s much easier to do good work in ethics with partners like those. Besides, Penn is the perfect place to do bioethics. There’s so much pharmaceutical industry and clinical medicine in Philadelphia, New York, and Washington, and there’s a real institutional commitment here to do novel research and teaching.”
Brief
career or not, McGee now firmly inhabits the strange space of the
bioethicist, publishing as much in medical and trade magazines as in
philosophical journals, and giving grand rounds and TV interviews as
often as he produces scholarly papers. He continues to eschew
conventional roles. This past year he turned down an attractive offer of
a tenured position in philosophy in the Southeast. “I’ve gone whole hog
on bioethics, and I love my job.”
It’s
somewhat difficult to describe that job, because bioethics is still
evolving. Two national commissions are working to define the credentials
bioethicists need before they can work in hospitals. Others in the
field work in philosophy departments, private companies, and law firms.
That’s how it should be, according to McGee. The “old” style of
bioethics, which he describes as carrying a beeper in the hospital and
responding to ethical alarms, has not been effective.
For
McGee, bioethics means “first you dig up — in a long and sometimes
arduous conversation — the philosophical and political context of a
problem.” This can mean both tough empirical work or thought
experiments. Either way, the solutions should be feasible —
economically, scientifically, and socially. “If so, you can find the
best way to employ the institutions you have at your disposal to solve
the problem.”
Which
brings us to McGee’s concept for the field’s primary task: providing
nothing less than a new social framework for making medical decisions.
That requires bridging the formidable gap that exists between the
medical and academic communities, the health insurance industry, the
law, and the lives of ordinary people. Nowhere is this task more urgent
— and controversial — than in genetics and assisted reproduction, the
areas where McGee concentrates his time. His main concern is that
genetic science has advanced much more quickly than the ability of
social institutions to deal with its impact.
According to McGee, parenthood itself is changing. Parents are able to expect more, and know more, of their children before they are even born. “We are moving from an era where people ‘had’ babies to an era where we ‘make’ them,” he says. As recently as the 1970s, most parents didn’t have the window on the womb provided by ultrasound, genetic testing, and the new array of reproductive choices. “If you wanted to plan for a healthy baby, you could think about who you’d date, who you’d marry, how old you would be at the time of birth. That’s it.” Now, it’s possible for couples to choose “sperm and eggs from strangers, sperm from your husband even if it can’t swim, eggs from your Aunt Cheryl.” Today, he says, designing a baby is becoming commonplace. “There are now more than 200 genetic tests! What’s a mother to do?”
McGee worries that “too many strangers are entering the room” from the beginning of the pregnancy until the day of delivery. And not just the donors, gestational carriers, and surrogate mothers, but “people with calculators.” These include actuaries, public health officials, and others, some of whom want to protect the gene pool, some of whom represent shareholders of the insurance companies, and a few who want to prevent pregnancies related to diseases. Then there are the genetic counselors, whose ideology, McGee believes, is still in its dark ages. “Say you’re a mom wondering whether or not to have a genetic test for cystic fibrosis,” he explains. “What’s your first question? It’s the value question: ‘What would you do counselor?’ But the average genetic counselor hasn’t had an ethics class, and takes an oath to be ‘non-directive.’ So that question isn’t going to be answered by a professional. Or even engaged. We have to do better.”
McGee
predicts genetic counseling soon will be replaced by CD-ROMs with risk
statistics and bland information about diseases. The real future of
counseling and helping pregnant couples lies in training ministers,
general internists, nurses, and others about genetic and family planning
issues. If so, in the next century, “the people we count on to help us
out with the tough family issues will also be trained to think about
genetics.”
McGee
also worries that many of these new issues will involve what he calls
“hairy confederations of state agencies and insurance companies.” He
gives an example that involves a whole wasp’s nest of questions. “My
prediction is that within five years, at least one insurance company and
one state government will begin to require genetic testing of a fetus
if there’s a family history of a particular disease.” In such cases, if
the test reveals a genetic predisposition for that disease (breast
cancer or iron-overload dysfunction, for examples) the insurer could,
under present law in 38 states, refuse to cover that child because it
would have a “pre-existing” condition. Perhaps worse, the state might
require the couple to forego Medicaid coverage for their fetus and
maintain a registry of genetic mutations in the family.
Where
would such a situation leave the parents? If the child is born and then
contracts the disease, the family could be bankrupted by the expensive
treatments required. But if they decide to abort the pregnancy, they
could forever be haunted by the prospect that the child might not have
been afflicted with the disease.
The scenario easily might go further, McGee says. He imagines that insurers will require fertile couples whose families carry hereditary diseases to produce embryos through in-vitro fertilization. Then pre-implantation genetic diagnosis will be conducted on those embryos to determine which are prone to develop expensive diseases and which are not. “The insurance company might say, ‘We will pay for you to have this expensive technology, even though you guys aren’t infertile, and we want you to sort out the CF embryos and implant the ones that check out okay.’ There’s no reason in the world to think this will not happen within 10 years.”
Couples
might begin to use genetic testing in order to enhance their offspring.
“A couple might produce 20 embryos for the purpose of picking out the
ones that are free of diseases. It’s like saying, ‘Hey, we’re in here
anyway. We’re already testing for diseases. Why not run all the tests
just to make sure we get the right kind of baby?'”
That
kind of thinking is very different from a woman sizing up a potential
father for her child. McGee warns that it smacks of very specific
expectations for the baby, “that it will be free of diseases, perhaps
carry the correct gene for fast thinking, for not having addictive
tendencies, for being hearing or deaf, gay or straight.” Expectations
are worrisome, he believes, because they can be shared — by the
insurance community, for example. “The companies would be saying, ‘If
you won’t do that and you have a kid, then we’re not going to cover that
kid because you had the opportunity to prevent [the disease] and
didn’t.’ And that’s dangerous.”
Anti-discrimination
laws (existing in 12 states) would preserve insurance coverage for
children whose parents already had such coverage, but they would not aid
the uninsured, McGee notes. And a new distortion would be created. “We
end up with a weird situation where the folks who have high blood
pressure because they’ve got a gene for high blood pressure get
insurance, but the ones who have high blood pressure because they eat
too many hot dogs don’t.” A better answer, as McGee sees it, is to
prohibit denial of health insurance coverage based on pre-existing
conditions.
We
reach our destination: WHYY, the local PBS affiliate, which is
furnishing a small studio and satellite link for McGee’s on-camera chat
with MSNBC. He slides the Acura into a parking space across the street,
dodges deep puddles and splashes from passing vehicles, and rushes
through the sleet into the studio — where he learns that the interview
has been delayed for at least an hour while the network covers a live
press briefing by a lawyer for the Dallas Morning News, defending
his paper’s report that Oklahoma City bombing suspect Timothy McVeigh
confessed the deed to his lawyer. McGee hangs up his dripping raincoat
and plops into a stuffed chair in the station’s lobby. Waiting for his
time on air is an unavoidable component of the ritual of TV appearances,
which McGee regards as an integral part of his teaching and his
profession — a viewpoint that occasionally propels him into conflict
with some of his colleagues, especially classical philosophers.
“Many
in my discipline criticize bioethicists for being too accessible,” he
says. “We’re not hard to find in the phone book, and we’re usually
pretty willing to make comments about social issues. That raises the ire
of some of my friends around the country. They consider bioethicists to
be the ugly underside of philosophy, because we can seem to be
opportunistic.”
He cites the cloning issue as a perfect example. “When this thing happened not too many of us hung up the phone. I talked to a lot of colleagues who had been asked to appear on Maury Povich and similar shows. I won’t do that, but I don’t fault the ones who will.” He explains that while the millions who watch Oprah in the afternoon may not ever take a philosophy course, they still must make difficult philosophical decisions, such as how many children to have, what constitutes a “good life,” and what to do if a parent needs nursing-home care, or even physician-assisted suicide.
His reasoning brings together the purpose of his profession, his own natural affinity for debate and discourse, and the huge, painful, nagging questions about medicine and reproduction that are affecting more and more families and that beg for answers. As he writes in his first book, The Perfect Baby: A Pragmatic Approach to Genetics, published this year, “While the issues of biological reproduction ‘matter’ for society at large, for science, for business, for industry, and for religion, the sphere within which our decisions about genetics are primarily made is that of the family, and particularly the institution of parenthood.”
For
McGee, such a situation is intolerable. “Philosophical discussions of
ethical issues in genetics, mostly written for scholars only, are
unlikely to help parents,” he argues, “not only because our typical
jargon-ridden dense prose is intended only for specialists, but also
because most of us have paid too little attention to the relevance
quotient of our work for actual couples facing difficult choices.” The
scholarly community has “largely ignored our universities’ promises to
be of service to the community at large, and those of us who are
philosophers are the most culpable.”
He
may be uniquely qualified to render such a judgment. For the bulk of
his young life, he has watched the development of applied ethics. He is a
second-generation bioethicist, perhaps the first ever. Born in Waco,
Texas, he grew up with a father, Daniel, who is both a well-known
theologian and one of the pioneers of bioethics. The younger McGee
recalls accompanying his father to Georgetown University’s Kennedy
Institute of Ethics and other institutions where the fledging discipline
was emerging.
As
he progressed through his education — at Baylor, where his father is
on the faculty, and Vanderbilt — and developed his own love affair with
philosophy, he observed what he considers a major and persistent
deficiency in academe: a disengagement from the dilemmas of real life.
“So much of our respected and published philosophy eschews the murky,
dark, and smelly places where human life happens.”
McGee’s Website, which has won a dozen awards, was the very first on the subject on the Internet. “It’s also the best,” he adds, sounding characteristically Texan. “I guess I basically invented philosophy on the Web.” The site includes an on-line virtual classroom in genetics, a page called “Bioethics for Beginners,” several electronic forums, and a virtual library of articles and links to everything from plagues to the ethics of circumcision. It is used in classes from Idaho to Norway, he says, and has been featured on CNN and in dozens of magazines.
Since
its startup in 1994, more than a million people have visited the site.
In the few days after the stories about cloning began appearing, some
30,000 people logged on. McGee is ecstatic. “How many professors have an
opportunity to spark intellectual curiosity in 30,000 people over a
weekend?” he asks, beaming.
Engagement
is the key, he firmly believes, but it must be with medical
professionals as well as the general public. It is perhaps most critical
to train and counsel doctors and nurses, because they are the most
direct source of information for parents and families about what it
means to have a healthy baby. The issues of modern reproduction are
complex and often frightening. Yet medicine continues to avoid the
personal and subjective aspects of treatment.
“Most
Americans would be stunned at how little training in the
physician-patient relationship most physicians actually receive. And
most medical students today learn only a modicum of genetics and nothing
at all about genetic tests or their implications for families and
society,” McGee says. Absent a studied and comprehensive response from
medical professionals, parents are left to sort out baffling and often
painful questions for themselves. “They make good and bad choices about
how and when to have children, with whom, and under what circumstances,”
but most of it is done without the support of society at large.
McGee
talks constantly about the inseparable relationship between biology and
culture, about how nearly every contemporary decision concerning health
and reproduction is somehow couched within a social context — whether
or not society acknowledges that relationship. It’s up to bioethicists
to demonstrate the connection, he says, to “provide a framework for
discussion and evaluation that matters.” And the best way to accomplish
this is to work relentlessly to focus the discussion on “problems for
real people living today, not facile test cases for some larger
universal theory.”
Take a family that discovers their unborn child carries an extra 21st chromosome, for what is commonly known as Down’s syndrome. Suddenly, their medical records become a potential liability. They are faced with the prospect of a child whose fate is wildly uncertain. How bad will the Down’s be?
Will the medical care pose a huge financial burden? Should they opt for
abortion? To whom should they turn for advice? They may rely on their
parents or siblings, or neighbors, friends, or clergy for guidance. But
answers to their questions, McGee says, are not to be found in the
current public discussion about pregnancy, genetics, and the family.
More such conundrums are likely to confront parents as genetic testing proliferates. Consider two further examples:
• Testing reveals that a fetus likely will develop Huntington’s disease, a severe disability that usually appears when a patient reaches his or her mid-40s. A person can have a completely normal life until then, but at 45, that life will come to an abrupt and painful halt. Should the parents consider aborting that child? Or should they gamble that a cure will be found in 40 years?
• A female fetus is found to carry the BRCA-1 gene associated with breast cancer. Does this preclude her from coverage later on? Will this prospect, however uncertain, lead the parents to consider an abortion? Should parents who know they carry the BRCA-1 gene be compelled or requested to use sperm or egg donation, or adoption, to avoid passing the gene
Despite the potentially agonizing consequences of these revelations, McGee opposes a clampdown on genetic testing — or on research or therapy, for that matter. Instead, he espouses something he calls a “pragmatic approach” to genetics and bioethics. Simply stated, it means figuring out a way to interpret new developments and decide difficult issues within the context of everyday life. It means, he says, “putting our best understandings of science and culture to work, using our ordinary parental wisdom to solve seemingly extraordinary problems.”
The
technician returns and invites McGee into a tiny studio about the size
of an apartment kitchen. In the 10-minute interview that follows,
conducted from MSNBC’s main studio in New Jersey, McGee, in
Philadelphia, is matched with an elderly, stern, Roman Catholic priest,
somewhere on the campus of Notre Dame University, whose entire position
seems to consist of claiming that cloning is against God’s will.
As
he has done with PBS, CNN, and more than 50 newspapers, McGee brushes
aside the predictable questions about cloning’s morality and the
prospects of cloning Hitler or Michael Jordan. Instead, he poses a
question of his own: whether the increasingly proprietary nature of
biomedical research is in society’s best interests. “No longer is
biomedical science primarily characterized by an open and constant
exchange of information about ongoing experiments and their status,” he
says. “Now, it has become both legal and commonplace around the world
for scientists to have a financial stake in the firms that patent and
sell the products of their work.”
The scientists who published the cloning paper in the British journal, Nature,
kept their research secret for exactly that reason. “They had lots to
lose,” McGee says. Besides, cloning, while scientifically intriguing, is
a very preliminary development. Years and years of research remain
before that technique is likely to be perfected. Of more immediate
concern for society is the economic and political framework that allowed
cloning experiments to take place under such secrecy.
The
interview concluded, McGee thanks the technician, retrieves his coat,
and we return to the street, now receiving a light covering of snow. On
the slow drive back to Penn through rush hour traffic, McGee muses about
how frequently and consistently the media get the big issues wrong. For
example, not once, he says, in any of the reports about the sheep
cloning — not on TV, in magazines or in newspapers — has he seen it
mentioned that clones can only come from females and can only create
females. So the Hitler-Michael Jordan issue is completely irrelevant.
More intriguing is the possibility that women will be presented with the
possibility of male-free reproduction.
In any event, cloning is a sideshow, he insists. The really important questions for the next couple of years concern genetic testing and other aspects of assisted reproduction, such as in-vitro fertilization, sperm and egg donation, gestational carriers, and the like. They represent an even larger source of consistent misconceptions. “We don’t have any kind of serious thought in this country about how we’re going to distribute genetic tests for cystic fibrosis or obesity, or tallness — nothing at all. The field is wide open. If someone wanted to offer any new test today, they could. There’s no mechanism to regulate it.”
That’s
a far more dangerous and imperative situation than cloning presents,
McGee maintains, because many, many genetic test results are inaccurate.
Yet new test procedures are offered on a regular basis, such as
Circulating Fetal Cell Analysis (CFCA), which can track the fetus’s
genetic profile by sampling the mother’s blood. Unlike the common
amniocentesis, or newer techniques such as chorionic villus sampling, it
presents no risk of miscarriage. But while CFCA is less risky for the
mother, it may prove in one sense to be more deadly for the unborn. As
more mothers are encouraged to use it, more fetuses may be aborted
because of discovered genetic defects.
In
McGee’s view, CFCA and similar tests ought to be ripe for vigorous
public debate. “Is the fetus entitled to a margin of error? Should there
be social rules articulating the sphere of therapeutic abortion, or
would that injure Roe v. Wade?” Despite the uncertainties
associated with CFCA, “the test will be available commercially long
before the public even recognizes that there are moral issues associated
with its use.”
This
is a pattern that emerges time after time. There currently is no
comprehensive program among philosophers to address genetic-testing
issues. Nor is there a regulatory structure for genetic testing. And
doctors and nurses remain largely unschooled in counseling and ethics.
“We keep learning about a new genetic test before we’ve even thought
about whether or not it’s a good idea.” That’s especially disturbing, he
says, because “most genetic tests are not very useful, and in many
cases we know much less than the test results suggest.”
There’s an urgent need here, according to McGee. Parents must be informed that genetic tests cannot ascertain how a child will turn out. Tests only indicate the genetic information in the particular cell that is sampled. “All our cells differ from one another genetically, even if only a little bit, because of mutagens and because of the effects caused by our developmental processes. The way my genes work is slightly different from the way your genes work. A test that accurately predicts whether a man in Japan will get stomach cancer may not work at all with me. Even so, many people have this idea that a genetic test will certify whether or not you’ll get sick.”
Given
this situation, McGee says, the immediate task of bioethicists and
medical professionals is to educate the public about the uncertainty of
the procedures, “to apply the speed brakes to the commercialization of
genetics.” Bottom line, he adds, is that genes are not destiny.
An ironic concept in Philadelphia, a city where, as Mark Twain once
observed, the most common question asked about a person in, “who were
his [or her] parents?”
We bump back into the parking lot, about a block away from McGee’s office. An empty child seat in the back bangs slightly. Divorced, McGee has his own two-year-old “perfect baby,” Ethan, about one-third of the year. Making the most of that is tough. “I like to say the Norman Rockwell family isn’t the goal of assisted reproduction,” he muses. “Maybe it isn’t even a good goal for ordinary family life. But being a good parent is. Every parent, no matter how imperfect the circumstances, deserves a chance to help his or her child thrive and flourish. It’s just that as our genetic and social goals become complicated and difficult, we have to have better habits if we want our kids to flourish on their own, rather than as a product of our expectations. Dreaming for your children, but allowing them to have their own dreams and growth — now that’s a helluva job.”
Phill Berardelli is an author and free-lance writer. He lives in Oakton, Virginia.
