Your Body, Your Genes, Your Child

When Ethics Seeks to Catch up to Science and Technology

Alfred Dubuc

Research on gene identification (human genome sequencing) relatively recently led to the definition of some 30,000 genes that determine human traits; in many cases, this research has succeeded in recognizing the defects of certain genes responsible for "genetic" disorders.

In the meantime, technological advances have made it possible to discover the presence (or absence) of a defective gene in the fetus through prenatal testing (chorionic sampling – during the 9th or 10th week after conception or amniocentesis – between the 14th and 16th weeks). (Kevles and Hood).

(Although already surpassed by recent advances in genetic research, the collective work directed by Kevles and Hood still remains valid, particularly for the history of genetic discoveries, biogenetic technology, and ethical, legal and societal issues.)

Catherine has neurofibromatosis type 1 (NF1), a genetic disorder that has a 50% chance of being transmitted. She and her spouse wanted to have children. When she became pregnant, the prenatal test by amniocentesis revealed the presence of the defective gene in the fetus, so she decided to abort. She explained:

  • We did not want the child to have to deal with the same problems that we were facing, nor did we want to risk having a child who would be sick...

Catherine was then very depressed for a few weeks, but she soon became pregnant again and learned, through prenatal testing, that this time her fetus was not carrying the NF1 gene.

I gave birth to a beautiful, healthy boy this past August 15, almost a year to the day after having lost out first son ... proof that life always finds its path (Poulin, 34).

The right of women to control their bodies, including the right to have an abortion, was already recognized in our societies, thanks in large part to the various feminist movements (and, in Canada, to Dr. Morgentaler, as well). It naturally ensued from this right, and from the possibility of knowing the genetic defect of her fetus, that a woman could abort such a fetus.

However, this freedom had already raised, a few decades ago already, a controversy about the possibility of choosing a child's gender: should the right to abort a fetus that was not the desired gender be recognized? This right was progressively denied (even by laws in certain countries) when it was acknowledged that that gender selection went against the equality of the sexes in a fair society (Ash and Geller, 336). The prohibition became more and more imperative when it was demonstrated that this practice was being used in certain cultures, like in China and India, to systematically eliminate girls. (Again recently, a UNICEF study conducted in the province of Maharashtra, in India, the capital of which is Mumbai (Bombay), revealed that, out of 8,000 abortions performed on account of undesired gender, 7,999 involved girl fetuses; for India overall, it is estimated that from 2 to 5 million abortions are carried out every year, despite the efforts of the Supreme Court to enforce the 10-year-old law that prohibits obstetricians from revealing the gender of a child to be born (V. Dougnac)).

The possibility of selective abortion due to a defective gene brings back the haunting thought of eugenics, the dream of creating a superior race through the elimination of people with disabilities, such as was practised in Nazi Germany, or the eugenic sterilization of people with mental disabilities, for economic reasons, practised during the 1920s and 1930s in close to 25 states in the United States, including California and Georgia, when it was thought that mental illness was hereditary, and similar experiences in Great Britain (Kevles).

Joan Ablon relates the comments of Rachel, one of the subjects in her survey on the socio-psychological impacts of NF1, who did not want to give birth to a child who would face the problems that she had herself:

  • But there are some bad times for me, not wanting to have a child with NF. To be called “genetically defective,” I mean, it's like Nazis. What I can say is, that the ethos of the concentration camps is here. In fact, I always feel schizophrenic because I'm a supporter of free choice and abortion and genetic counselling and amniocentesis and that women have a right to choose how they run their lives and run their bodies, but I always feel a little twinge when I realize that it's generally deformed babies that are being aborted. Most of my friends who have babies have healthy babies, but abort the deformed babies. I always gasp because I would have been aborted! And, I would abort if I had a genetically deformed child. It just makes me a little nervous because society needs to have all kinds of people in it. (Ablon, 85).

Does the right to have an abortion recognized to women extend to the freedom of disposing of a fetus because of a defective gene responsible for a functional disorder? The answer to this question has been the subject of considerable debate. There is no simple answer, since the issue focuses on two conflicting principles: the right of the mother to self-determination and the right of the fetus to protection (Somerville, 26).

This dilemma can be expressed between members of the same family:

Mary has a severe form of NF1. Asked about what she would decide if, after becoming pregnant, she learned that her fetus carried the defective gene, she promptly answers, in an impatient tone, as if the question should not even be asked: "I would never get an abortion!"

Her sister, spared from the disorder, maintains that, under the same circumstances, she would abort in order to avoid bringing into the world a child who would suffer for his or her whole life, like her sister, and also to save the family from the emotional burden and the heavy care that the family would have to give to the child.

Evidently, a moral issue faces each of the two sisters, but in an opposite way.

What about the ethics surrounding this issue? Has ethics been overtaken by science and technology? Could it be that we are in a time of ethical void, and do we not have the duty, as humans, to update our moral convictions and re-affirm or redefine our values?

Margaret Somerville maintains that there is an ethics time that is different from science and technology time:

  • An irreducible minimum time is needed both to obtain the necessary facts on which to base good ethics and for a sedimentation-of-values process that is essential to doing ethics. [...]
  • A minimum amount of time is also needed for the public to become familiar with the benefits, potential benefits, risks and harm of a new scientific development, not only at the physical level, but also at the level of its potential impact on values, norms, traditions, customs, culture, beliefs and attitudes (Somerville, 281).

But science and technology are developing rapidly. Must they wait for ethical (and legal) reflection to promote the application of their discoveries?

  • ...we must take the time necessary to keep scientific progress and moral progress moving forward together...
  • ...we must decide what we must not do with the new science, no matter what benefits are promised...
  • In other words, we must do science in ethics time and not vice versa (Somerville, 283).

The comments related in this text show that ethics has not yet caught up with science and technology—at least among the public—with regard to selective abortion due to a genetic defect. The literature demonstrates that even the issue of seeking a defective gene through prenatal testing is the subject of ongoing debate.

Our associations, who give themselves the task of providing support to their members, cannot relinquish to the genetics clinics the responsibility to respond, through ethics, to the moral concern raised by the new capacities of medical technology.

Certainly, the Confédération des organismes de personnes handicapées (COPHAN) [confederation of organizations for persons with disabilities] can play an awakening role toward an ethical reflection on the new aspects of medicine raised by biogenetics.

References

  • Ablon, Joan, Living with Genetic Disorder : The Impact of Neurofibromatosis 1, Westport, Conn., Auburn House, 1999.
  • Asch, Adrienne et Gail Geller, «Feminism, Bioethics and Genetics», in Wolf, Susan M., 318-350.
  • Dougnac, Vanessa, «Inde, ces filles qu'on tue», in La Presse, 10-01-2004, Plus-5.
  • Kevles, Daniel J., «Out of Eugenics : The Historical Politics of the Human Genome», in Kevles, D.J. and Leroy Hood, 3-36.
  • Kevles, Daniel J. and Leroy Hood, dir., The Code of Codes: Scientific and Social Issues in the Human Genome Project, Cambridge, Mass., Harvard University Press, 1992.
  • Poulin, Catherine, «The Path to Giving Life», in L'Entraide NF, v. 5 (March 2003), 32-34.
  • Sommerville, Margaret, The Ethical Canary: Science, Society and the Human Spirit, Toronto, Penguin Books, 2000.
  • Wolf, Susan M., dir., Feminism & Bioethics : Beyond Reproduction, New York and Oxford, Oxford University Press, 1996.

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