Submission on NHMRC Review of Ethical Guidelines for Assisted Reproductive Technology Stage 2

Update:

 

The updated Ethical guidelines on the use of assisted reproductive technology were released by the NHMRC in April 2017.

 

Pleasingly, they made some improvements both to the previous guidelines and to the draft revised guidelines that had been released for consultation. However, they did not address all of the points made in my submission (see original post, below).

 

First, they do not include a stand-alone ethical principle of non-discrimination, retaining it as only one element of principle 7 (“Processes and policies for determining an individual’s or a couple’s eligibility to access ART services must be just, equitable, transparent and respectful of human dignity and the natural human rights of all persons, including the right to not be unlawfully or unreasonably discriminated against”).

 

Second, on the other hand they did update the discussion of this principle on page 26 to substitute sexual orientation for sexual preference, and to add new grounds of gender identity and intersex status. Which is certainly an improvement from the original guidelines, although it would be better for the latter attribute to be replaced with sex characteristics, as called for in the March 2017 Darlington Statement.

 

Third, disappointingly but also somewhat expectedly, the NHMRC did not overturn the ethical prohibition on commercial surrogacy, something I continue to see as a necessary harm reduction initiative to limit the possible exploitation of women in overseas countries.

 

Fourth, the guidelines continue to allow staff members to refuse to provide ART procedures on the basis of their conscientious objection: “A member of staff or a student who expresses a conscientious objection to the treatment of an individual patient or to an ART procedure is not obliged to be involved in that treatment or procedure, so long as the objection does not contravene relevant anti-discrimination laws and does not compromise the clinical care of the patient…” Which means the laws of all state and territories will need to be reviewed to ensure discrimination against LGBTI people accessing ART services is specifically prohibited.

 

Fifth, and perhaps most concerningly, the NHMRC has left the door slightly ajar to the sex selection of embryos – something that has specific dangers, right now, for intersex embryos, sets a dangerous precedent for possible selection against diverse sexual orientations and gender identities in the future, and reinforces negative gender stereotyping more broadly.

 

While the NHMRC has retained the existing prohibition on sex selection (“8.14 Sex selection techniques may not be used unless it is to reduce the risk of transmission of a genetic condition, disease or abnormality that would severely limit the quality of life of the person who would be born”), they have also stated this situation could change in the future:

 

“despite AHEC’s majority view that there may be some circumstances where there is no ethical barrier to the use of sex selection for non-medical purposes, paragraph 8.14 applies until such time that wide public debate occurs and/or state and territory legislation addresses the practice.”

 

Any such moves will need to be resisted.

 

Sixth, and finally, the NHMRC address some, but not all, of the points raised by OII Australia (now Intersex Human Rights Australia) and endorsed in my submission, including:

 

  • The guidelines do recommend the provision of information and counselling to prospective parents where “clinics should promote an environment of positive acceptance and non-discrimination”, but
  • The guidelines do not specifically rule out the use of pre-implantation genetic testing to prevent the births of intersex babies.

 

Original Post:

 

Project Officer – ART Public Consultation

Ethics and Governance Section

Evidence, Advice and Governance

National Health and Medical Research Council

GPO Box 1421

CANBERRA ACT 2601

ethics@nhmrc.gov.au

Thursday 17 September 2015

Dear Project Officer

ETHICAL GUIDELINES ON THE USE OF ASSISTED REPRODUCTIVE TECHNOLOGY IN CLINICAL PRACTICE AND RESEARCH

Thank you for the opportunity to provide a further submission to the National Health and Medical Research Council (NHMRC) review of Part B of the Ethical guidelines on the use of assisted reproductive technology in clinical practice and research, 2007 (the ART guidelines).

The following submission builds on my earlier submission, in April 2014, to this review (a copy of which is available here: https://alastairlawrie.net/2014/04/20/submission-on-nhmrc-review-of-ethical-guidelines-for-assisted-reproductive-technology/ ).

Overall, while I note that there have been some positive outcomes from the previous round of consultation – including the recognition in para 5.1.2 that “[c]linics must not accept donations from any donor who wishes to place conditions on the donation that the gametes are for the use only by individuals or couples from particular ethnic or social groups, or not be used by particular ethnic or social groups”, and the revised approach to transmissible infections/infectious disease at para 5.2.5  – there remain a range of areas where the ART guidelines should be improved.

First, I believe that the ‘principles and values’ outlined on pages 12 and 13 of the draft ART guidelines should include a specific principle of Non-Discrimination, and that the explanation for this principle should explicitly acknowledge that there should be no discrimination on the basis of sexual orientation, gender identity or intersex status in the provision of assisted reproductive technology services.

Second, and on a related matter, in the chapter “Application of ethical principles in the clinical practice of ART”, the discussion under point 3.5 on page 15 should be updated to reflect contemporary best practice.

Specifically, the sentence “[t]here must be no unlawful or unreasonable discrimination against an individual or couple on the basis of:

  • race, religion, sex, marital status, sexual preference, social status, disability or age”

reflects out-dated terminology and does not recognise all necessary groups.

The term ‘sexual preference’ should be replaced by ‘sexual orientation’, and the additional terms ‘gender identity’ and ‘intersex status’ should be added, to ensure that all members of the lesbian, gay, bisexual, transgender and intersex (LGBTI) community are protected from discrimination, and also to ensure that the ART guidelines are consistent with the protected attributes covered under the Sex Discrimination Act 1984.

Third, consistent with my previous submission, I disagree with the discussion under point 3.6 on page 16 regarding commercial surrogacy.

In particular, I do not support the blanket statement that “[i]t is unethical for individuals, or couples, to purchase, offer to purchase or sell gametes or embryos or surrogacy services” or the equally unequivocal blanket ban at para 8.7.1 (“[c]linics and clinicians must not practice, promote or recommend commercial surrogacy, nor enter into contractual arrangements with commercial surrogacy providers.”)

As outlined previously, I believe that the Australian Law Reform Commission (ALRC) should be asked to investigate the issue of commercial surrogacy, including consideration of what a best practice scheme would look like, before determining whether all commercial surrogacy services should be deemed unethical and therefore illegal.

From my previous submission:

“While I agree that commercial surrogacy raises a variety of complex ethical issues, I do not necessarily agree with such a broad-sweeping and all-encompassing statement against commercial surrogacy. I do not believe there is sufficient evidence to assert that in every single situation commercial surrogacy is ‘unethical’ or ‘wrong’.

 Of course, I am, like most people, sensitive to the very real potential for commercial surrogacy to result in the exploitation of women for their reproductive capabilities. This has to be a major, if not the major, consideration in determining whether to allow commercial surrogacy and if so what form of regulation might be appropriate.

 However, I am also aware that the current legal situation – where commercial surrogacy in Australia is banned, and as a direct result of these laws an increasing number of Australian individuals and couples are engaging in commercial surrogacy arrangements overseas – may in fact cause a far greater degree of exploitation of women, especially in developing countries and/or countries which do not closely regulate surrogacy arrangements.

 It may be that a domestic ban on commercial surrogacy has, contrary to the intended outcome of those who introduced it, in fact resulted in greater exploitation of women when considered as a whole. It may also be that, creating a domestic commercial surrogacy scheme, which would allow for direct oversight by Commonwealth (or State and Territory) authorities, could lead to a significant reduction in the potential for such exploitation.

 I do not expect the review process considering these Guidelines to come to a conclusion about these difficult matters. Nor am I willing, or in a position, to even attempt to suggest what a domestic commercial surrogacy scheme would look like.

 However, I do believe that this is an issue that requires further investigation, and could be the subject of a comprehensive review by the Australian Law Reform Commission, or their State and Territory equivalents.

 The ALRC could be asked not to review whether such a scheme should be adopted but to determine, if commercial surrogacy was to be allowed in Australia, what the best possible scheme (with the least potential for the exploitation of women) would look like. The Parliament, and the wider community, could then discuss and debate the option that was put forward and make an informed choice about whether such a model was preferable to the ongoing domestic ban on commercial surrogacy (and the corresponding trend to overseas surrogacy arrangements).

 I believe that such a debate, informed not just by a practical proposal but also by the real-world consequences of the current ban, is vital before we can truly come to grips with and possibly resolve whether a permanent ban on commercial surrogacy is ethical or otherwise.”

Fourth, I continue to oppose ‘Conscientious objection’ provisions (under point 3.7 on pages 16 and 17) that would allow a member of staff or student to refuse to treat an individual or couple on the basis of that person’s sexual orientation, gender identity or intersex status, or on their relationship status.

The refusal to provide a medical service on these grounds is, and always should be considered, unethical.

Again, from my previous submission:

“While I note that the provision of ART services may, for some staff members of students, raise ethical concerns, I believe that the drafting of this provision is far too broad, and allows for conscientious objections even when such objections are themselves unethical.

 For example, the provision as drafted would allow an individual member of staff to refuse to provide ART services to a person on the basis of that person’s sexual orientation, gender identity or intersex status (if that person believed that ART services should not be provided to such persons) or on the basis of relationship status (if the person believed that only ‘opposite-sex’ married persons should have access to ART).

 With the increasing acceptance of LGBTI Australians (as evidenced by the long-overdue introduction of federal anti-discrimination protections in 2013) and of different relationship statuses (including the 2008 reforms to federal de facto relationship recognition), none of these objections – while potentially genuinely held by the individual – should be allowed as the basis for refusing to provide ART services. Nor should conscientious objections on the basis of any of sexual orientation, gender identity, intersex status or relationship status be recognized as acceptable or ‘ethical’ in the context of these Guidelines.

 If [point 3.7] is to be retained in the Ethical Guidelines, I recommend that it be amended to specifically note that conscientious objections do not apply, and are not accepted, with respect to the sexual orientation, gender identity, intersex status or relationship status of the intended recipient of the ART procedure or service.”

Fifth, in response to the discussion of “Sex selection for non-medical purposes” on pages 55 to 58 of the consultation draft, I submit that sex selection should not be allowed on these grounds.

There are three reasons for this:

  1. Based on evidence from the submission of OII Australia (Organisation Intersex International Australia, see their submission here: https://oii.org.au/29939/nhmrc-genetic-selection-intersex-traits/ ), it appears that sex selection is already being used to select against embryos on the basis of intersex variations. This practice is entirely unethical, intending to prevent the birth of children on the basis of where they sit along the natural spectrum of sex variation, and should cease.
  2. Allowing sex selection for non-medical purposes also sets a negative precedent, opening the door in future to selecting for (or more likely against) embryos on the basis of gender identity or even sexual orientation if and when genetic testing emerges which can accurately predict the existence of, or even pre-disposition towards, these traits.
  3. As acknowledged by the consultation paper on page 55, there is a strong “possibility that sex selection for non-medical reasons may reinforce gender stereotyping, and create pressure on the person born to conform to parental expectations regarding gender.” This practice will be particularly harmful towards children born as a result of such procedures where those children express a different gender identity to that which the parents ‘choose’, and also may negatively impact children who are homosexual or bisexual.

On this basis, I do not believe that sex selection is appropriate in any of the case studies presented on pages 56, 57 and 58, and submit that it should not be included as an ‘ethical option’ under the ART guidelines.

Sixth, and finally, I would like to express my support for the submission by OII Australia to this consultation. Specifically, I endorse their recommendations that:

  • “Information giving and counselling must include non-pathologising information, aimed at supporting a philosophy of self-acceptance”
  • Pre-implantation genetic testing (PGT) should not be used to prevent the births of intersex babies and that
  • “The practice of sex selection should not be permitted for social, child replacement, or family balancing purposes.”

Thank you again for the opportunity to provide a submission to this consultation process. Please do not hesitate to contact me, at the details below, should you which to clarify any of the above, or to seek additional information.

Sincerely,

Alastair Lawrie