The nobility and ethics of infertility research
I used to avoid conversations about reproductive ethics. As a practicing reproductive endocrinologist my opinions were tainted by self-interest. Beyond that my actual opinions are such an odd mixture of libertarianism, conservatism, patient advocacy and gut feeling that civilized conversations threaten to careen off the road with little warning.
But having retired from clinical practice I now have no reason (other than cowardice) to avoid discussing some of the ethical aspects of how I used to try to both help people and make a living doing so.
What is the core good that can be achieved through research into human reproduction, and what are the forces that can limit the potential for realizing that good?
There should be no disagreement that prevention of heritable disease (through preimplantation genetics and IVF), easing of the suffering of infertile women and couples, and better knowledge of how specialized cells like eggs and sperm function are desirable goals. Further, only those who wish to turn back the clock on assisted reproduction and eliminate in vitro fertilization as a means of having children would argue that time and resources spent improving the safety and efficiency of IVF are misused.
Research into human reproduction should be viewed as noble and worthwhile, as justified of the world’s appreciation as the investigation of cancer or heart disease. Much of the world, however, views research in reproduction as a poor relation to the efforts to explore acute disease or the diseases related to aging later in life. Government funding is nonexistent and philanthropic grants are relatively small. Those least deserving of the burden of research costs, the patients themselves, foot the bill for the development of treatments that will likely benefit others. The ethics of research into reproduction is constantly called into question by a press poorly educated in the science in which the experiments are grounded and too quick to incite torch-carrying masses to storm the mad scientists’ castle.
Why should the good work that clinicians and scientists who have chosen human reproduction as their area of inquiry and discovery be unfairly called into question? More important, why should the patients who need and seek out this form of medical care be subject to an extra level of scrutiny or have to justify their needs and choices? Why in the twenty-first century should the process of infertility care make people feel badly about themselves (a not uncommon part of the process, as anyone close to it knows.)
(Wouldn’t it be great if every other year we dedicated Mother’s Day to infertility patients? Hmm, idea for another article…)
Why is this area of medicine treated differently than others?
The dispassionate observer could point to the stakes involved in reproductive health. Infertility kills no one; cancer and heart disease do. Granted, untreated infertility remains a static source of suffering, unlike untreated diabetes, which results in greater suffering and damage if not actively addressed. The same observer could point out that much of what we characterize as “infertility” and therefore pathology is actually a physiologic sub-fertility (particularly as the patients reach their late thirties and forties) and not worthy of the same attention as a disease process that clearly diverts one from the path of normal health.
Closer scrutiny weakens these arguments. The inevitable outcome of aging is reduction in function of all organ systems, and the distinction between “disease” and “normal wear and tear” loses its sharp lines when one sees that a majority of human beings, left to the good graces of normal physiology, will develop atherosclerosis, osteoporosis and non- life threatening failing vision.
But while the dispassionate observer may agree that there are unequivocal benefits to the study and treatment of reproductive inefficiencies, he or she is not the reason that research into reproduction is threatened. A second group, the passionate observer, is much more of a concern.
Part one of the problem is the close relationship between creation of pregnancy and the termination of pregnancy. If the “a” word can be introduced as an issue it will to some become the only issue, and to those there can be only one resolution: that is, eliminate the source of the debate. While we should aspire to a reproductive technology that reaches “one embryo, one pregnancy” efficiency, we cannot ignore the fact that humans are normally inefficient at reproduction, and any treatment we develop to address infertility will reflect that inefficiency as well. If nature needs to create over two embryos to produce one baby than we probably do too.
The other source of the lack of respect accorded to research into ART is the perception that we place no limits on what we should do in the laboratory as technology advances. Reproduction is more than just an engineering equation and reproduction and reproductive technology go beyond equal signs and p values (a measure of statistical significance.) At last years’ meeting of the American Society for Reproductive Medicine and at a lecture I gave to the Penn Center for Bioethics, the more important (and in my view) ethically unambiguous aspects of recent research work into oocyte function were first defined by a comparison to reproductive cloning. When I challenged a very good science reporter on this seemingly media-wide bias he answered that the world sort of understood cloning and, after all, don’t we get most of our attention for cloning research?
He was right; we do. And that defines another challenge in reproductive research. In order to legitimize the work that we do, we need to define what we do not do. Since 1997 the field of assisted reproduction has been defined by its relationship to cloning. And while there may be valid arguments on both sides of this issue, the media and by extension much of the world assumes that within our field there is no debate: if it can be done it should be done.
Personally I see no need ever to clone a human cell for the purpose of producing a human being, which by strict definition is the only real cloning. (“Therapeutic cloning” is not really cloning at all.) But this will remain a semantic argument as long as we reject participation in the ethical discussions that surround reproductive research, discussions that grow louder daily. And our participation has to be better than, “We know more about this than anyone so just leave us alone.”
Our science and our patients deserve our participation in data collection, interpretation and in defining the big picture.