Submission to ACART on Informed Consent and Assisted Reproductive Technology

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Introductory Comments

Our approach to the moral/ethical issues associated with the use of assisted human reproductive technologies is based on a number of beliefs. Of those that are particularly relevant to this Consultation Document unconditional respect for human life at all stages of its development is the most important. Catholic teaching holds that without exception the living embryo has, from the moment of fertilisation, an absolute right to life. A unique human life is begun - it is already the human being it will always be and will only grow in size and complexity. On that basis all embryos are entitled to be treated with the same respect as persons.

Secondly, whatever people believe about the acceptability of IVF, a clear moral distinction exists between homologous IVF (where the gametes are sourced from both partners within the relationship) and heterologous IVF (where one or both gametes are sourced outside of the commissioning couple). This distinction rests on the fact that homologous IVF conserves the natural links between parenthood, family and genetic origins. Our sense of personal well-being is linked with a healthy self-identity, something that is intimately tied in with a lived knowledge of our biological ties. On this basis we believe that children have the right to grow up within the family networks that are generated by our biological ties. This right should only ever be compromised in situations where it is clearly in the interests of the child involved.

In previous ACART Discussion documents we have recognised and complimented ACART on the fact that there were real attempts to consider the ethical issues from a perspective that actively considers the rights and well-being of the child that is to be conceived. However, we are disappointed to note that, apart from Appendix 2, the term “potential offspring” arises only once in this document. While this might be understandable given the document’s specific focus on “informed consent”, in our view it highlights the serious short-comings of an “informed consent” approach for dealing with the ethical issues associated with the use of human assisted reproductive technologies. As we have previously stated: “An over emphasis on the sufficiency of individual informed consent … reflects a failure to acknowledge the wider impact of technological interventions.”

Issues:

Access to information that must be disclosed to patients and donors prior to consent: We note that the Code of Health and Disability Consumers’ Rights upholds the right to be fully informed. We further believe that information provided to couples using heterologous IVF should summarise research on the importance of biological connections for the well-being of potential offspring.
Form of consent: We agree with the arguments set out in the document supporting the need for consent to be in writing.
Donor consent to use gametes or embryos for training purposes: We support the need to obtain consent from donors for the use of gametes or embryos for training purposes, as is consistent with Right 6 of the Code of Health and Disability Consumers’ Rights.
Placing conditions on donor consent: We support donors’ rights to place conditions on their consent. We consider that gamete and embryo donations are different from blood or organ donations because they create on-going relationships. However, we agree that gamete or embryo donors should not have the right to limit the decisions of prospective parents after an embryo has been created, or after a donated embryo has been transferred to a uterus.
Ongoing information for donors on the use of their gametes: We agree that gamete donors should be given the option of receiving ongoing information if the gamete is about to be used and on the outcome of the donation. Our status as relational beings demands respect for the genetic, gestational and social dimensions of human procreation. Providing on-going information to donors is consistent with the relational responsibilities that flow from human procreation and, in the situation where an embryo has been created from donated gametes, provides the best chance of maximising the possibilities of an on-going relationship between the potential offspring and their biological parent. While the law in New Zealand does not permit anonymous donation, it strikes us that information relating to a child’s biological origins still depends to a significant extent on the attitudes and willingness of the adults involved in the process.
Withdrawal or variation of consent by donors: We agree that donors should be able to withdraw or vary consent to the use of their gametes up to the point of fertilisation.
Consent of a partner, family or whānau to donation or use of donor gametes: We do not agree that the consent of partners should not be required. A spousal type relationship is based on a high level of trust and intimacy. In addition, it is of the essence of such relationships that they have a parental dimension. Direct involvement in parenting a child outside of such a relationship without disclosing it to one’s spouse/partner is arguably a violation of the trust, as well as the sense of exclusivity, that lies at the core of any permanent couple relationship – it has the potential to destabilise such a relationship, including commitments to any children that a donor might already have with her or his partner or might have in the future. We consider that although consent of family or whānau to the donation or use of a donor’s gametes should not be required, it is best, in the interests of transparency and relational integrity, that individuals be encouraged to consult their family or whānau (as happens generally with whāngai arrangements, for example). However, we do not think this should be mandatory.
Couple disputes about the future use of embryos: We agree there should be a ‘cooling off’ period of twelve months where one party in a couple disputes the future use of embryos that have been created for them. We reiterate our belief that embryos have their own ‘intrinsic’ dignity which exists independently of the wishes and desires of any related adults and that giving time to resolve any dispute is consistent with this dignity. It is our hope that adults would have access to counselling in this situation and that counselling would include presenting a case in favour of life from the perspective of the embryo. We do not agree that if the couple cannot resolve the dispute in that time, the embryos should be disposed of. Allowing embryos to die if the dispute cannot not be resolved effectively gives power of veto to the non-consenting party, while ethically the rights of both parties should carry equal weight. We suggest that in these cases the existing 10 year storage limitation period set out in the HART Act should apply. Framing conflicts about the future of embryos in terms of whose interests should prevail – whether the male partner or the female partner – inevitably takes couples into a legal and therefore adversarial forum. We need to avoid an adversarial approach to conflicts over embryos because they are effectively based on (patriarchal) assumptions of ‘ownership’. A non-patriarchal and more child-centred approach is premised on the idea that parents have responsibilities towards their offspring, including embryos, rather than rights over them. A responsibility-based approach is more likely to bring about a satisfactory resolution without, even unwittingly, reinforcing the ‘ownership’ paradigm wherein the rights and dignity of embryos are too easily lost to view. We further suggest that all couples need to be counselled about the possibility of such a conflict occurring before they consent to any procedures that will result in the creation of embryos.
Form of requirements for informed consent: We agree that the requirements for informed consent should be set out in regulations.
Final comments: We are concerned about the language used, specifically the reference to embryos being “disposed of”. In general parlance we dispose of ‘things’ – usually things that have no value to us and that are seen as ‘rubbish’. The presence of this language in the Consultation Document highlights for us one of the dangers inherent in the use of assisted reproductive technologies; replacing what is a very human and personal act (the conjugal act) with one that is of a more technical nature (IVF), no matter the motivation behind such a decision, means that the risk of commodification lies but a small step away. While not a step that is logically necessary, it can be a step we take without realising it. This step is often revealed by the language we find ourselves slipping into, including terms such as ‘dispose’. The presence of this language in the Consultation Document is further evidence of a lack of awareness in practice of the rights of any “potential offspring”, as was highlighted in our introductory remarks.

Staff of The Nathaniel Centre