Choosing Genes for Future Children: Chap. 4 - Ethical Issues
Henaghan, Mark, CHOOSING GENES FOR FUTURE CHILDREN, Chapter 4, Human Genome Research Project, 2006
70 Pages Posted: 3 May 2011
Date Written: August 1, 2006
The fact that embryos are specifically created for selection in the use of PGD entails their possible rejection. This, rather than the PGD activity itself, is thought by some to be objectionable as it is said to instrumentalise embryos. Equally, other arguments are used by opponents of PGD, for example that it may have negative effects on resultant children and that there may be risks to the child’s physical and/or emotional status. The emotional risks would be the hardest to quantify but some believe that the power of choice put into the hands of parents by PGD could alter the parent/child relationship fundamentally from one of unconditional love to one dictated by the realisation (or not) of specific ‘designer’ expectations.
There are a number of arguments against PGD. One of them is the ‘Playing God’ objection which is examined from the Christian viewpoints, and from the secular standpoint in terms of interfering with the natural order.
The wide and differing range of views held by the general public on the status of the embryo and foetus cannot be ignored. New Zealand legislation already permits abortion and PGD on limited grounds, and so does not reflect the conservative view of the foetus although the limits imposed might be construed as opposing a completely liberal view. There are no conclusive arguments, nor is there any crucial evidence, which can resolve the differences in views from various accounts of the status of the human embryo and foetus. The question of whether PGD should or should not be permitted is ultimately not usefully addressed by seeking an answer to the question of the status of the human embryo or foetus.
The moderate or ‘gradualist’ approach to the human embryo – an approach that sees the embryo as more than a mere collection of cells, but as less than a full person – is adopted in this report. This approach requires that the embryo of the human species is worthy of respect at all stages, but that certain interventions/treatments may be permissible at certain stages, with the limits of permissibility narrowing as the embryo/foetus nears maturity.
Selecting embryos on the basis of their genetic status is a matter of considerable concern for many people – particularly those speaking for the disability rights community. Attitudes vary as to whether or not the availability of PGD to screen out genetic conditions will result in disrespecting people with disabilities or whether this use of PGD sends out a eugenics signal.
Discussions about these issues in New Zealand are emerging. The New Zealand Organisation for Rare Disorders is open to the use of emerging genetic technologies for parents to choose to avoid the birth of children with disabilities. For the Crippled Children’s Society, their focus has been to consider changing their constitution to emphasise that they celebrate the lives of people with disabilities.
The place of people with disabilities and the impact of clinical advance on their position is sometimes seen to be somewhat marginalised, and surely deserves special protection. New Zealand does not have a Disability Rights Commission (as, for example, the UK does) although it has a Minister for Disability and an Office for Disability Issues. Additionally, even with a number of statutes relevant in this area (the New Zealand Bill of Rights Act 1990, Human Rights Act 1993, and Health and Disability Commissioner Act 1994), New Zealand has no body directly responsible for issues that fall under the category of promoting good relations between people with disabilities and their communities.
The bioethical analyses are informed by the Universal Declaration of Bioethics and Human Rights (UDBHR)25 which significantly focuses on the inter-relationship between bioethics and human rights, and helps shape thinking and reflection for both the process of developing policy and determining the content of policy. At the heart of the ethical analysis of PGD is the tension between, on one hand, individual freedom and privacy to make reproductive choices and, on the other hand, social solidarity and responsibility to ensure that human dignity is not eroded or undermined.
Keywords: Preimplantation Genetic Diagnosis, Law, Genetics, Ethics, Human Genome, Genes, Enhancement, Prenatal Testing
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