Template for response Part B of the Ethical Guidelines on the Use of Assisted Reproductive Technology in Clinical Practice and Research, 2007 This template has been provided to prompt feedback. Questions are not compulsory. You may manipulate this tem plate to suit your desired submission – including the addition of organisational logos. Please delete the questions you do not wish to address. Submission via NHMRC Public Consultation Website Once you have created your account, please upload your competed template to the NHMRC public consultation website. Submission via post or email The ‘offline submission form’ MUST accompany your submission. To assist the ART Working Committee in the consideration process, please submit your comments as a Word document (or equivalent). Not confidential Template for response Name: Life, Marriage and Family Centre, Catholic Archdiocese Organisation*: of Sydney *Please only include the name of the organisation here if the submission reflects the views of the organisation 5 Ethical principles for clinical practice of ART General Questions Q3. Should Section 5 recognise the significance of the ‘biological connection’ (e.g. between donor-conceived persons and the donors of gametes, between donor-conceived persons and their siblings or half-siblings, or between persons conceived from donated embryos and their genetic parents) as an additional ethical principle for the clinical practice of ART? (see also questions in relation to Paragraphs 6.1.1 and 6.1.2 and Section 9.2). The meaning and significance of the biological connection between children and parents and between children and siblings or half-siblings should be recognised as a core ethical principle for the clinical practice of ART. The importance of the child’s right to his or her identity and biological heritage is recognised by the UN Convention on the Rights of the Child and by the collective experience of adopted and donorconceived children. The loss of a child’s biological connectedness is a profound injustice when it is created and fostered deliberately, as sadly is often the case with some applications of ART. An increasing body of biographical accounts has described how discontinuity between a child’s genetic parentage, gestational parentage and social parentage can result in the harmful experience of ‘genealogical bewilderment’. 1 2 As Margaret Somerville, Australian bioethicist and professor of law at McGill University, has explained: Knowing who our close biological relatives are and relating to them is central to how we form our human identity, relate to others and to the world, and find meaning in life. Children – and their descendants – who don’t know their genetic origins cannot sense themselves as embedded in a web of people, past, present and future, through whom they can trace the thread of life’s passage down the generations to them.3 1 Christopher White, ‘Surrogate parenthood for money is a form of human trafficking’, Forbes, 4 April 2014. http://www.forbes.com/sites/realspin/2014/04/04/surrogate-parenthood-for-money-is-a-form-of-human-trafficking/ 2 This phenomenon was first identified by British psychiatrist Eric Wellisch in his 1952 article, ‘Children without genealogy – a problem of adoption,’ Mental Health 13 (1952): 41-42. 3 Margaret Somerville, ‘Brave New Babies’, MercatorNet, 12 September 2008. Not confidential Template for response 6 Use of gametes in reproductive treatment programs Questions 11 – 17 & 22 - 23 also relate to Section 7 - Use of donated embryos. General Questions Section 6.5 Q20. In view of developments in other countries allowing women to receive compensation above medical and travelling expenses for donating eggs, should it be permissible for Australian women to also be compensated for the reproductive effort and risks associated with donating their eggs? (See also Section 13 Surrogacy) Allowing financial payments to be given to egg donors fosters a market in gametes and surrogacy that is incompatible with human dignity. Overseas experience indicates that such a market increases attitudes of commodification towards both women and children. Section 6.10 – 6.11 Q24. Do you think that the current ethical guidance is adequate? o Should information about the number and sex of half-siblings be available to donor-conceived persons? o Do you think that more information about half-siblings should be available to donor-conceived persons? e.g. identifying information. Please see General Comments Q25. Do you consider 18 years of age too late to have access to this information? o Should earlier access to the information be possible? In keeping with the common law regarding adolescents and their evolving capacity to consent to significant medical decisions, earlier access to this information should be made possible when a child has expressed the desire for this information and has demonstrated the capacity to understand its significance and ramifications. Not confidential Template for response Section 6.12 General Comments on Section 6 The ‘donation’ and/or selling of gametes is a violation of the dignity of the human person and of the right of the child to be conceived in an act of love between his or her father and mother, to know that father and mother and, as far as possible, to be cared for by them (United Nations Convention on the Rights of the Child, Article 7). This practice should be discouraged. Where it is permitted, it is vital that the fullest possible protections be put in place of the child’s right to know their biological and/or birth parents, siblings and halfsiblings, and their biological, cultural and religious heritage. Donor and recipient information should be made available to all the individuals concerned, as a matter of justice, including identifying information about parents and half-siblings. Not confidential Template for response 7 Use of donated embryos In addition to questions 11 – 17 & 22 – 23. General Comments on Section 7 The plight of so-called ‘unwanted’ embryos is a great tragedy and reflects a grave wrong done to these human beings. State authorities should do all they can to discourage the creation of embryonic children who are then denied their right to know and be cared for by their biological parents and may be handed over to others to raise. Not confidential Template for response 8 Storage of gametes and embryos General Comments on Section 8 The storage of human embryos in a state of suspended animation is an affront to their dignity. The creation of so-called ‘excess’ embryos, where no serious or realistic intention exists to implant them in their mothers, reflects a cheapening of human life and should be ceased. There is no truly good option in the tragic situation where embryos have already been created and frozen. However, it may be that the course of action most in keeping with the human dignity of these embryonic human beings is to allow them to thaw, succumb to a natural death and to have their remains laid to rest in a dignified and respectful way. Not confidential Template for response 9 Information giving, counselling and consent Specific Questions Section 9.2 Q42. Among the information which should be discussed, should there be specific reference to the significance of biological connection between donor-conceived persons and the donors of gametes, and to the right of these donor-conceived persons to knowledge of their genetic parents and siblings? (see also questions in relation to Section 5 and Paragraphs 6.1.1 and 6.1.2) The significance of the biological connection between children and their genetic parents, siblings and half-siblings should be explicitly recognised as a requirement of justice to the child, consistent with their human dignity. Donors must be informed about the significance for children of knowing their biological relatives and its importance as a matter of basic justice and human rights. Not confidential Template for response 10 Record keeping and data reporting General Comments on Section 10 Begin typing… Not confidential Template for response 11 Sex selection Specific Questions Q51. Is it possible to define a “serious genetic condition” for the purposes of allowing sex selection? If so, please provide a suitable definition. Although a serious genetic condition is a tremendous challenge and heartache for families, the deliberate destruction of an embryonic human being because he or she has a sex-linked genetic condition is a grave violation of the right to life of that embryo and embodies the judgment that persons with sex-linked genetic conditions should be eliminated from our society. What is needed is a greater level of support services for couples and families who face a prenatal diagnosis of a serious genetic condition and ongoing social and financial support to enable them to care for their child and give them the best life possible. General Comments on Section 11 Sex-selection of human embryos is a grave violation of the equal right of male and female children to life. It can in no circumstances be considered ethically acceptable. Disincentives for sex selection should take the form of lifeaffirming prenatal care from fertility specialists, medical and nursing practitioners and strong messaging at all levels of government and society about the value of human life and the equal dignity and worth of male and female children. Greater community support is needed and greater funding of support services for couples and families that will encourage them to cherish and value the life of their embryonic daughter or son. Not confidential Template for response 12 Preimplantation genetic diagnosis Specific Questions Section 12.1 – 12.2 Q.3 Under what situations do you think the use of preimplantation genetic diagnosis is ethically acceptable? Preimplantation genetic diagnosis is only ethically acceptable when it is directed to maintaining the life and health of the human embryo. If it is used in order to prevent that embryo from being implanted and to arrest or terminate its natural development, it is not a genuine therapeutic application but an attack upon the dignity and right to life of that embryonic human being. General Comments on Section 12 Preimplantation genetic diagnosis, when it involves the deliberate selection of an embryonic child for either life or death based upon his or her genetic profile, is ethically unacceptable. PGD is a rejection of the intrinsic dignity and worth of the human embryo and is a failure to treat him or her with the unconditional love and respect owed to every child by their parents and by the medical practitioners who should care for that child. Not confidential Template for response 13 Surrogacy Specific Questions Section 13.2 Q57. In view of developments in other countries, should there be compensation, more than expenses, for gestational mothers congruent with the reproductive effort contributed? The buying and selling of the most intimate and personal of human activities – the bearing of a child – is ethically unacceptable and must continue to be rejected. The existence of this ‘trade’ is a tragic sign of the continued inequality and exploitation suffered by many women in our world. Financial compensation for gestational mothers will only continue to draw the neediest and most economically and socially disadvantaged women into the ‘market’ for reproductive ‘labour’. General Comments on Section 13 As new surrogacy ‘markets’ open up in the global economy, women are becoming both the consumers and the consumed. The dignity of women is violated, because the bearing of a child is not simply a biological function which can be ‘outsourced’ to another in return for financial compensation, but a profoundly intimate relationship involving her whole person. Surrogacy violates the dignity of the child by treating him or her as a commodity. Regardless of the level of ‘demand’ for children, it is imperative that state authorities maintain the prohibition on the buying and selling of reproductive ‘labour’ and recognise it as a grave violation of human dignity. Not confidential Template for response 14 Innovations, training and quality assurance General Questions Q59. Have you encountered any difficulties in the interpretation and/or application of the current ethical guidance in Section 14? Begin typing… Q60. Do you think that there are gaps in the current ethical guidance in Section 14? Begin typing… General Comments on Section 14 Begin typing… Not confidential