In the spirit of raising awareness of the ethical challenges inherent in today’s most advanced medical technologies, the IHEU-Appignani Center for Bioethics and Bioethics International recently sponsored a one-day conference in New York City entitled “New Dilemmas in Medicine”. Three panels of distinguished experts, in turn, addressed three pressing issues: Professor Julian Savulescu’s theory of “Procreative Beneficence” (Journal of Medical Ethics 2007;33:284-288; doi:10.1136/jme.2006.018184), ethical considerations in pharmaceutical R&D, and “conscientious objection” by medical professionals to performing medical procedures, such as abortions, to patients who want them.
Each of these 3 topics could easily take up their own multiple day conference, and then some. The first thing I found myself having to do, in order to assimilate educated opinions on each subject, is to struggle to overcome my own personal opinions and biases, which was not easy. All of these topics are highly emotionally charged, and bound to be approached therefore in the most subjective manner by each individual who contemplates them. Having said this, I will do my best to impart to you what I got out of each panel discussion, with as much objectivity as possible. This post will address the first of the 3 panels.
Panel #1: To Have the Best Child Possible: The Coming Age of “Procreative Beneficence”?
The idea of “Procreative Beneficence” was jelled into a unified concept by Professor Julian Savulescu of Oxford University (Uehiro Chair in Practical Ethics, and Director of the Oxford Uehiro Centre for Practical Ethics), and basically states that having the choice to screen human fetuses for various genetic characteristics, select embryos with desirable traits and discard those with undesirable traits is a positive thing, or eugenics by choice, if you will. (For a “down to earth” discussion of Professor Savulescu’s ideas, please go to http://www.guardian.co.uk/science/2005/oct/10/genetics.research). The idea is to give parents the chance to improve the quality of their children’s lives by allowing them to be born as attractive and intelligent as possible, without the burden of physical or mental deficiencies, using the latest reproductive technologies.
- The first brave panel expert to express her opinion of “procreative beneficence” was Jennifer Kimball, Executive Director of the Culture of Life Foundation, a non-profit policy organization dedicated to education regarding Christian pro-life views on bioethics. Ms. Kimball characterized Savulescu’s theory as procreative “maleficence”, in that it devalues the inherent “natural, authentic, and noble” desire of humans not to create human life, but rather to procreate. Married couples who procreate in effect “consent to an initiative that precedes them”. They are aware that through their sexual union they have consented to the possibility that their union will result in the birth of a child, who like the parents have innate nobility that the parents naturally respect by taking responsibility for raising the child. In Kimball’s opinion, procreative beneficence is a contradiction in terms, i.e. artificial reproductive technologies force a life that was not naturally conceived into being solely to satisfy the will of those who want the child. Kimball points out correctly that artificial reproductive technology is an industry, and that those who use the technology are in effect customers who are shopping for something they want. This is something that, in Kimball’s eyes, is tantamount to “autonomous hedonism”. Kimball and those who are like-minded see this as negative, and in regard to the commercial aspect of the industry I can see her point. I couldn’t help thinking, as I listened to her, that she is only looking at the negative aspects. What about all of those parents who abuse their naturally conceived children, or who otherwise just don’t want them? How much suffering does that cause, and how could that possibly be more against the inherent nobility of humanity? Unfortunately I didn’t get to ask her this. Also, what could be wrong with parents who desperately want to have their own genetic offspring? In these sorts of cases, the parents may have many reasons to go through with assisted reproductive procedures apart from their natural desire to procreate, although because it is such an emotionally charged issue, it can be impossible to tease out their true motivation(s). It is this fundamental motivation that Kimball and her colleagues are concerned with.
- The next panelist was Dr. Arthur Cooper, Professor of Pediatric Surgery, Columbia University College of Physicians and Surgeons, and Director of Pediatric Surgical Services at Harlem Hospital in New York City. Dr. Cooper approaches the topic of procreative beneficence from the perspective of a physician upon whom parents and families depend for treatment of a child born with various physical problems. In his view, there are many considerations, and the role of a physician is to educate his patients about all the options available to them, not to choose for them. Dr. Cooper teaches his residents that surgeons are not G-d, and at best they can aspire to be “G-d’s hands”. In effect, Dr. Cooper was saying that there are just no easy answers to the question of procreative beneficence, but that physicians should take part in the debate and become as educated as possible, in order to provide the best possible service to their patients.
- Dr. Eva Feder Kittay, Professor of Philosophy at SUNY Stonybrook, in New York, cited various psychological theories regarding the issue of the “choice” aspect of procreative beneficence. Dr. Kittay is mother to 2 daughters, both now adults, and one of whom is disabled. She describes the experience of raising a child with disabilities in the context of an article written by Emily Pearl Kingsley in 1987 called “Welcome to Holland”. Ms. Kingsley is a mother of a child with Down’s syndrome, and in her article she describes the experience of giving birth to this child as having taken a plane to Italy but instead arriving in Holland. The process of coming to terms with the birth and the raising of this child is akin to accepting that you’ve arrived in Holland and making the best of it. In time, you realize that you’re not in a bad place, but instead in a place with its own unique charms, and you adjust. Dr. Kittay’s basic message was that often, what we think we desire turns out to be very different from the reality. We need to realize that even with all the choices that are offered now in reproductive technology, we actually have far less control over the outcome than we think, and that coming to terms with this can facilitate adaptation to the realistic outcome, whatever that may be. The best we can hope for is guidance.
- Dr. Barbara Katz Rothman, a Professor of Sociology at CUNY, observed that sociology doesn’t really seem to make any impression on bioethics. In studies of social structure, the zip code of the family is the primary predictor of producing happy children. This emphasis on the financial bottom line is far more prevalent in American society than in the Netherlands, for example. Dr. Rothman cited an incident in which she was actually asked to participate, in which the Dutch government was approached by sales reps of a biotech company trying to aggressively market serum testing for markers of various birth defects. The Dutch government made clear that they were not in favor of eugenics and would not base their decision on an economic bottom line. The biotech reps simply could not understand why the Dutch government wouldn’t want to save money by preventing the birth of children with defects that were enormously expensive to treat. When Dr. Rothman interviewed Dutch midwives about testing for birth defects during pregnancy, the midwives felt that the testing would “spoil the pregnancy”, or take away the joy of being pregnant by introducing additional worry into the whole process. In other words, there is a “slippery slope of value judgments for increasingly shaky scientific decisions”. The family is the context in which quality and reality of life is defined. Such things as “family balancing” by sex selection of fetuses seems extremely immoral in this context. Quality of life is proportional to the level of sanity in the family. The language of procreative beneficence, with its emphasis on too much choice, actually silences the individual by blurring this reality.
- The last panel member to address the idea of procreative beneficence was Professor Udo Schuklenk, Professor of Philosophy at Queen’s University in Canada. He is also the founding editor of the Developing World Bioethics Journal. Professor Schuklenk agrees with Savulescu up to a point, in that his theory lives in a pro-choice environment. The harsh reality of life is that no matter how much an individual is loved by his/her family, the cold cruel world will still discriminate against those with physical and mental disabilities, and these individuals will have a decreased quality of life. Therefore the choice to abort fetuses with such disabilities is something that should be permitted. However, when it comes to non-disease traits, such as intelligence or homosexuality, the distinction becomes less clear. Intelligence is not a guarantee of a good quality of life; if you look at the lives of many famous authors, artists, and inventors, they were absolutely miserable. Take Van Gogh, for example, or any graduate student, for that matter. A homosexual person will most likely have decreased quality of life, but if certain individuals choose to abort a fetus that is determined to be a future homosexual, life for those who survive will be even more difficult.
In summary, these experts eloquently their expressed their position on the spectrum of moral, ethical issues surrounding the debate on procreative beneficence. The only real fair outcome of this discussion is that the more people know about these issues, preferably before they are expecting a child, the better decision they will be able to make. The more informed the decision, the easier it will be to sort out realistic expectations from the illusion of what life could be like for the family after their child is born.