Learning to love human imperfections

CONTROVERSIAL ethical questions and challenges surrounding stem cell research were explored at the opening debate of the eighth Gulbenkian round of health seminars currently being held.

Dr. William F May, who served on President George Bush’s Council for Bioethics between 2002 and 2004, argues that we risk heading in a direction where we design perfect babies to order, rather than accepting nature’s lottery. The renowned ethicist also believes that failure to ban stem cell research in the private as well as public sectors will lead to commercial exploitation and failure to share scientific benefits with those with less financial means.

Offering his personal take on the issue, rather than officially representing the Council for Bioethics, Dr. May believes we are caught between the “yearning for perfection and the struggle with the unelected marks and defects that go with our birth”. In his view, parents need to accept a child as he or she is, yet we increasingly define and seize upon our children as products to be perfected and their flaws to be overcome.

The two faces of science

Modern science exhibits two sides of love suggested here. On the one hand, science engages us in beholding and lets us study and savour the world as it is; on the other hand, science and the technology it generates engage us in moulding and in transformation projects to amend and perfect the given world.

The policy issue of human cloning or, technically, stem cell nuclear transfer divides into two proposals. Cloning to produce a child – a nearly exact genetic replica of a single parent, or cloning for the sole purpose of medical research directed to the treatment or eradication of severe diseases such as diabetes, Parkinson’s disease and Alzheimer’s disease, and impairments such as spinal injuries.

The question of parenting

After several months, all council members voted on a ban to use cloning as a way of producing children. On a second proposal of cloning for biomedical research, 10 members of the council voted for a four-year moratorium on federally funded research, except on stem cell lines already identified before President Bush’s cut-off date of August 9, 2001.

“A minority of seven council members, myself included, voted to permit such research, but only with the development of firm regulations governing both federal and privately funded research,” Dr. May explained. He argues that the consequences of cloning for research on devastating diseases would put one on a slippery slope.

Cloning children would entail a profound alteration in human parenting as the latter asks us to be open to the genetically strange, which is part of accepting love. Every one of us is the not wholly anticipated mix of two genetically different human beings. Parenting requires an openness to the unbidden, an acceptance for what is received.

‘Human life but not a live human’

Advocates of such research might argue that a ban on cloning and stem cell research would delay or block the possible development of therapies that might save human lives. “Is the pre-implanted embryo one of us? That question surfaced over and over again in the debate,” he said.

Three answers emerged. Some scientists would deny altogether the microscopic material in the petri dish was ‘one of us’ and, therefore, would justify unregulated research. A second group, proponents of the ban, would define ‘one of us’ broadly to include pre-implanted embryos.

However, a third way of thinking about the pre-implanted embryo emerged at the council. According to this view, the pre-implanted embryo occupies an intermediate status – it is neither a full human being nor a mere ‘thing’.It is human life but not a live human, rather a cluster of cells moving towards a human life. The opponents of stem cell research have marginalised issues of justice by concentrating all their firepower in favour of a ban moratorium on federally but not privately funded research. This is because they find it disturbing that their tax dollars would fund research that would destroy a nascent human life. “However, the moral tidiness of a federal ban plus a defacto unregulated marketplace, in my judgement, is illusory,” said Dr. May.

The absence of regulations governing the marketplace will expose society to the commercial exploitation of women in the extraction of eggs, in the lowering of time limits on permissible research, and in the housing of embryos in human and non-human uteri.

“By privatising ownership of unregulated research in the marketplace, we weaken obligations to share benefits from such research with all in need,” Dr. May concluded. Chris Graeme