Reproductive technologies: Advancing Science or "Playing God"?

By Suria Santana

Most people would agree that parents have the right to utilize the latest medical technology to ensure that their babies are born free of disease.

Kathy Hudson, Ph.D., Director, Genetics and Public Policy Center

However, there is fierce debate when the discussion turns to the process of creating embryos and manipulating their genes for a desired outcome.

Recently, the convergence of advances in genetics and reproductive science has allowed physicians to perform tests and alterations at the embry- onic level, raising hopes for the cures of fatal diseases but also creating a number of ethical dilemmas. One such practice, called pre-implantation genetic diagnosis (PGD), has been used by an increasing number of hopeful parents, most of whom utilize it to ensure a successful pregnancy and avoid passing a genetic illness to their child.

PGD involves the removal of one or two cells from eggs fertilized via in vitro fertilization, the genetic testing of these embryos, and the destruction of the ones possessing "undesirable" characteristics. After selecting the embryos with the desired genetic makeup, physicians implant them into the womb of the mother-to-be.

In response to the public's concern about where such reproductive technologies might lead, a research institute was created two years ago to examine the many issues resulting from the translation of recent advances in genetics into medicine. The Genetics and Public Policy Center's first project is to analyze the uses of genetic technologies in reproduction.

"We will be looking at a whole range of issues at the interface between society and policy, science and medicine," said Kathy Hudson, Ph.D., director of the new center. "Because genetic testing in reproduction is here and now, while the concept of genetic modification is a bit more futuristic, we decided that [genetic testing] should be our current priority."

Although there are a variety of genetic tests being offered to interested parents and parents-to-be, Dr. Hudson's group decided to focus specifically on PGD and recently released a report outlining policy options to address the scientific and ethical challenges raised by genetic testing of human embryos.

Before releasing this report, Dr. Hudson conducted 21 focus groups in five U.S. cities last year to explore the public's attitudes on reproductive genetic technologies including genetic testing of parents, embryos, and fetuses. The results reflected a broad array of concerns the general public has about PGD.

"First, there are concerns about procedures that involve the destruction of human embryos," she said. "There are certainly people in America who feel that embryos have moral value and should not be created and destroyed."

Other critics denounce the selection of embryos based on the results of a genetic test, Dr. Hudson continued. "Sometimes that is expressed in religious terms, such as 'we are playing God.' Other times, it is expressed in more secular terms, as in the fact that PGD is unnatural, and we should be having babies the good old-fashioned way by candlelight."

There is also concern about the extent one should allow any system of regulation to move into the bedroom and influence reproductive decision-making, according to Dr. Hudson.

Despite these concerns, the public draws a clear line between what is considered "acceptable" and "unacceptable" uses of these new tools of medical science, according to the surveys. Americans indicate support for using reproductive genetic technologies to prevent disease but are uncomfortable with using these technologies to select socially desirable traits such as eye color, intelligence, or height. And despite the general support for genetic testing for disease prevention, there is a "slippery slope" fear. If genetic testing is done now to avoid the birth of a child with a severe genetic disease, this could inevitably lead to genetic testing for socially desirable traits, or "designer babies."

Other concerns expressed by the focus groups involved the safety and effectiveness of such technologies, as well as broad societal issues regarding whether these techniques are going to be available only to the wealthy.

Academic Health Center's Involvement

Despite issues of equity and the fear that scientists might be overstepping their boundaries, proponents of reproductive genetic testing and research have raised a number of ethical arguments in favor of such practices.

"We have two choices in terms of reproduction," said Mary Marshall, Ph.D., professor of medicine and bioethics at Kansas University Medical Center and director of the Institute of Bioethics Law and Policy. "One is not making carefully selected choices and letting things happen by default and not learning as we go. The other is to be thoughtful and care-ful about how we proceed with this research so that we can learn from it and make strides in the area of reproductive medicine and also in the area of health promotion and prevention."

Strides are being made in the labs of many academic health centers. Earlier this year, physicians and scientists at New York-Presbyterian Hospital/Weill Cornell Medical Center successfully employed PGD for retinoblastoma to create an embryo free of the deadly eye cancer.The father of the baby is a carrier of the genetic defect, which in some cases results in a 50 percent chance of transmission to offspring.

The medical center has offered PGD for carriers of other genetic disorders and chromosomal abnormalities including Tay-Sachs disease, cystic fibrosis, sickle cell anemia, hemophilia, thalassemia and Fanconi's anemia.

Other academic health centers in the country are also exploring this technology. Joe Leigh Simpson, M.D., chair of the Department of Obstetrics and Gynecology at Baylor College of Medicine, said Baylor used PGD to increase the success of in vitro ferti-lization (IVF).

The IVF pregnancy rate of 25 percent depends upon the age of the mother, and the rate declines as the woman gets older.

"A major reason for that dire prognosis is that one has a very large number of chromosomally abnormal embryos," Dr. Simpson said. "So the logical stretch here is, 'Why don't we test those embryos and transfer back the ones that are chromosomally normal, at least to the extent that that's possible?' One can pick up about 75 percent of chromosomally abnormal embryos with the available probes that are used."

Even though a lot of work is being done in this area, many questions remain unanswered, according to Dr. Simpson. The use of PGD in conjunction with IVF may contribute to a dra- matic drop in miscarriage rates, but it still unknown just what kinds of patients can benefit from the procedure.

PGD is also being done at Baylor to determine whether a parent runs the risk of passing a genetic illness to a child, Dr. Simpson said.

Answering the Ethical Questions

Although one can argue that tampering with embryos poses a hosts of ethical problems, Dr. Marshall argues that in some cases leaving it all to chance is just as ethically unsound.

"Joseph Fletcher [author of Morals and Medicine] did a lot of early thinking about genetic research. His analogy was that if you knowingly bring a human being into the world with a genetic disorder or a condition, that can be likened to dropping a child out the window on its head," Dr. Marshall said.

Dr. Marshall says that attempting to resolve these ethical issues is a far superior route.

"To let things happen by default is a choice, but even though these are very evolved ethical questions the better choice is to put them on the table and argue about them from different perspectives," Dr. Marshall said.

Since these questions generate a host of moral and religious concerns, teaching hospitals that are affiliated with religious institutions have dealt with reproductive technologies in a much more conservative manner. At Creighton University's School of Medicine medical centers, doctors and researchers abide by the "Ethical and Religious Directives for Catholic Health Care Services," issued by the National Conference of Catholic Bishops. The directives forbid all forms of high-tech IVF outside a woman's body, a position that stems from the Catholic Church's position that it is immoral to separate conception from sexual intercourse.

Despite the institution's position on IVF and other related techniques, medical students and faculty often engage in free wheeling discussions about the use of reproductive technologies, according to Winifred Pinch, Ed.D., a professor at Creighton. "When tea-ching class, I try to look at all of these issues across the board, from all possible perspectives," she said. "I don't feel that my personal opinion is important in terms of what the students decide is right, since these students come from different religious, social and cultural backgrounds."

Dr. Pinch believes that the issues PGD and IVF bring to the fore transcend religion and spirituality, however. "Using PGD can be viewed as a form of discrimination against the disabled," she argued. "The fact that we're looking for perfection could mean that we might have less tolerance for people who may have limitations, and none of us are perfect. How far are we willing to go in this arena?"

Answering these questions will likely take ethicists and policymakers a long time.

"There has been an absence of federal involvement in all things embry- onic," said Dr. Hudson. "It's a big unknown whether we'll see more atten- tiveness in this area."

The center's latest report paves the way for policymakers, presenting a full range of alternatives on dealing with these revolutionary technologies.These include policies containing "fairly stringent government involvement all the way to basically leaving things as they currently stand, letting individual patients and their healthcare providers make the decisions about when to use what tests and under what conditions," Dr. Hudson said.

"New biomedical technologies have a tendency to sneak up on us," she said. "This report [is a tool] to catalyze broad public discussion about this profound use of genetic testing and aid decision makers as they consider what policies can best keep pace with the rapid advances in reproductive genetics."

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