In 1989, scientists first used PGD (preimplantation genetic diagnosis) - a technique that merges IVF with genetic testing, enabling couples with increased risk of passing a genetic disorder onto their children to screen and select only unaffected embryos for implantation. PGD involves the removal of a single cell from three-day-old IVF embryos for testing. Many faiths have moral concerns regarding its unforeseen non-medical use for sex-selection, the creation of 'saviour siblings' - screening embryos to conceive a renewable tissue-match donor for an existing sick sibling - and potential use for selecting particular genetic traits.
On 19 November 2008, Progress Educational Trust (PET) hosted its annual conference: 'Is the embryo sacrosanct? Multi-faith perspectives'. The morning session, reviewed in BioNews 486, concentrated on this question generally from seven predominant world faith perspectives and their views of fertility treatment and embryology. The second session, herein reported, looked closer into how two polarised religious perspectives applied their faiths to PGD.
The session was deftly chaired by Dr Alan Thornhill, Scientific Director of the London Bridge Fertility, Gynaecology and Genetics Centre. An audience of diverse backgrounds gathered to learn the science behind PGD as presented by Yakoub Khalaf, Clinical Director of the Assisted Conception Unit at Guy's Hospital, before considering the present and future applications of PGD in light of the ethical issues according to the religious perspectives presented by Peter Harvey, Professor of Buddhist Studies at the University of Sunderland and Co-founder of the UK Association for Buddhist Studies, and Sheila Briggs, Board Member of Catholics for Choice and Associate Professor of Religion and Gender studies at the University of Southern California.
Khalaf endorsed PGD, from a medical perspective, as sitting with doctors' duty of beneficence through the prevention of future unhealthy children and parents' anguish in caring for children they cannot cure and/or to avoid the trauma of repeated miscarriages sometimes caused by genetic disorders. He stressed that PGD's primary purpose as disease-prevention and overcoming infertility refutes the media's spin that this technology is about engineering 'designer babies'. He emphasised that PGD is not chosen 'lightly'. A team of health professionals at fertility clinics decide whether PGD is appropriate for couples with genetic disorders.
Without PGD, couples must risk natural conception and undergo prenatal diagnosis (PND) testing - with a one per cent risk of causing miscarriage at 14-20 weeks gestation. If a condition is positively diagnosed then mothers must decide whether to terminate. Khalaf explained that PGD is less invasive, less risky and that it should be less problematic for faiths than abortion.
However, as Peter Harvey explained, PGD is morally problematic in Buddhism. Buddhist teachings value all life as interrelated through reincarnation, but human life is the most cherished; a rare gift presenting the opportunity for spiritual development towards nirvana. Human life begins at conception, when 'the stream of consciousness from a previously deceased being enlivens an egg'. Buddhist doctrine esteems embryos as 'precious human rebirth' earned through good karma from a previous life. Deliberately killing an embryo and killing a person are equally wrong.
In contrast, Sheila Briggs interpreted Catholic tenets to conclude that human life is more than mere physical existence. Briggs values personhood, taking a 'gradualist' view that attaches incremental value to human development. She agreed that embryos have instrumental value deriving from their essential role in reproduction and affording them a special status, but not equal with children. She insisted that to equate the two, as in Buddhism, demeans the personhood of children and their intrinsic value. 'There is no such thing as a disabled embryo,' she observed, making the point that embryos fundamentally lack capacity for consciousness to experience an existence limited by disability or genetic disease. Without this capacity, Briggs believes embryos, though requiring respect, lack interests or rights.
For Harvey, the central moral question posed by PGD is whether one should 'generate human embryos when one knows that some will be killed/deliberately allowed to die?' Harvey acknowledged a compassionate intention motivates PGD. He also explained that Buddhist dictum mandates that any choice be exercised with the greatest compassion for all involved. If the psychological or spiritual damage caused by caring for a severely disabled child outweighs the negative aspects of letting surplus embryos die then PGD may be morally acceptable. However, Buddhism's high moral value of the embryo, he concluded, would permit PGD only for extreme circumstances - for example when to be born would be so excruciating that to not be born at all would be less harmful, such as with horrific debilitating diseases like Tay Sachs.
Harvey agreed with Briggs that if one embarks on IVF then religious ethos would obligate the use of PGD when medically indicated to select healthy embryos. He suggested that the deceased embryo lives should be acknowledged, perhaps through a simple voluntary ceremony or parents performing good deeds on their behalf.
Ultimately, in light of the uncertainty of karma's affect on one's genetics, Harvey advocated erring on the side of caution and choosing other less morally-conflicted and compassionate options available to prospective parents with genetic disease, including adoption or choosing childlessness (he had not considered donor gametes but when raised thought this was a plausible ethical option).
Briggs accepted PGD as an ethical possibility but not because of the embryo's moral status which lacks any clear consensus. For her, the pertinent moral criteria is the best interests principle of the future child. Briggs believes the Catholic moral question in PGD is whether the medical risks involved with PGD are proportionate to the need for genetic information gained. This potential justification rests upon what is best for the future child.
The talks sparked a lively debate addressing a range of the more controversial aspects of the extended and potential uses of PGD starting with 'enhancement' - using PGD for genetic selection that would 'improve' children's lives. One audience member queried whether using PGD to select beneficial genetic traits is any more limiting than the environmental choices that parents make for their children. Medically there are costs to embryos undergoing PGD, Khalaf explained, and no guarantee that embryos with selected traits will express them. He would not advise undergoing the risks of PGD to select social traits.
Malcolm Hodgson, a member of PET's advisory committee, pushed for their views if all scientific barriers were removed. Khalaf said he is uncomfortable with enhancement beyond a medical function. In response to another question, Khalaf conceded that he had no problem with using PGD prevalently to eliminate susceptibility to Malaria or disease-prevention purposes but all agreed that this is too impractical given PGD's expense and reproductive invasiveness.
Harvey responded that these choices may benefit people but they morally degrade society. Both Briggs and Khalaf remained sceptical that science will ever achieve screening for many complex qualities that are subjectively defined and valued. Briggs argued that a mother selecting traits to have healthy babies is 'a very different phenomenon' from having the genetically best children. She countered bioethicist Julian Savelescu's contention that a mother's duty is to have the best child possible. She argued that there is no consensus on what constitutes 'best child' but there is consensus defining 'health'. For Briggs, selection of social traits, including gender, violates the best interests principle paramount to parental choice by placing these children at risk of emotional harm if they fail to use these traits to meet heightened parental expectations. She also maintained using PGD for particular social outcomes of children unethically limits their future life plan.
Several points were made regarding saviour siblings. Professor Marcus Pembrey, chair of PET, asked all the panellists whether 'saviour siblings' are a step too far. All but the Roman Catholic view accepted this use of PGD as a last attempt to save an existing sick child. Roman Catholic speaker David Jones illustrated his objection by having no problem with a deaf family adopting a deaf child but taking issue with the family of a sick child adopting a child to be a donor. Jones suggested that saviour siblings are an in-between position on a slippery slope to enhancement.
Khalaf disagreed because of the blatant medical purpose to alleviate suffering. Thornhill repeated an interesting moral question used by Dr Peter Braude, Director of the Centre for PGD at Guy's and St Thomas' Hospital, to evaluate this topic: How close a relationship must exist to justify saviour sibling creation to help a sick child of a parent, uncle, employer, friend...?
One member of the audience challenged the panel's rejection of Thornhill's characterisation of saviour siblings as 'commodification' of children in a consumer culture. He suggested that although there is no harm to the saviour sibling when donating, we might be fundamentally infringing human dignity. Rabbi Binstock made the significant point that parents choose to reproduce for many reasons that instrumentalise children, including extra hands to help with the family business.
Helen Watts of the Linacre Centre for Healthcare Ethics, a UK Christian bioethics institute, took issue with Briggs' interpretation that embryos lack interests arguing that people in comas have interests and children's right to education exist without their conceptualisation. Briggs refuted that these are not analogous. Children and persons with medically impaired consciousness nonetheless have capacity. 'I do not believe in the 'I' of the embryo and you need an 'I' to have interests,' she explained.
Thornhill moved the discussion onto regulation. Candidates for PGD must carry a 'significant risk of a serious genetic condition'. He wondered if a religious perspective of how to define 'serious' exists. One audience member challenged Briggs' presumption that there is a consensus on what characteristics are positive and negative for children's best interests and mentioned the controversy voiced by the deaf community against classifying deafness as a disability. Briggs acknowledged the difficulty of universally regulating parental choices in today's pluralistic society.
Another person questioned whether eradicating genetic disease undermines social justice by reducing resources and social support to care for those who have genetic disorders. According to Khalaf, the numbers are probably too small to impact widespread demographics, citing that only an estimated 200 babies have been born using PGD with roughly 6000 cycles performed.
In summary, Thornhill noted that all faiths conceded PGD's good intentions to alleviate human suffering, albeit morally-conflicted for some. He closed with optimism observing that this area is heavily regulated in part because it is self-regulated. It has and will continue to engage the public providing an added layer of scrutiny that should reassure us all that abuses will not be tolerated and differing views will clash to help devise the most balanced ethical approach to the regulation of PGD and its anticipated extended applications.
The session concluded amidst unfinished audience participation indicating that despite the small numbers undergoing PGD, it fascinates members of all faiths as a technology anticipated to forge new procreative frontiers and establish precedent social policy in its wake.