The launch of an
ambitious project like Galileo provides an ideal opportunity to examine the
core good that can be achieved through research into human reproduction, and
the forces that can limit the potential for realizing that good.
There
should be no disagreement that prevention of heritable disease, 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?
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.
At both the recent 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 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.
