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

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

Advertisements

Submission on NHMRC Review of Ethical Guidelines for Assisted Reproductive Technology

The Australian National Health and Medical Research Council is currently reviewing Part B of the Ethical Guidelines for the Use of Assisted Reproductive Technology in Clinical Practice and Research, 2007.

These Guidelines provide advice on a wide range of matters, including whether and if so in what circumstances someone can refuse to provide an ART procedure, and whether someone can direct that their gametes or embryos may only be used (or not used) by particular ethnic or social groups. They also currently include a prohibition on commercial surrogacy.

I have made a submission to the inquiry – which I reproduce below – which, as you can tell, largely argues for LGBTI equality, but also adopts a position on commercial surrogacy which I know some might find controversial (and if people do disagree with me I encourage you to leave a comment below).

I believe as many people as possible should make a submission to the review, because it should be informed by voices from across the community, including the LGBTI community (and that includes people who disagree with me on commercial surrogacy too). The details for the review, and how to make a submission, can be found at the following link: <http://consultations.nhmrc.gov.au/public_consultations/assisted_reproductive The closing date is Wednesday 30 April (ie ten days away), so time to get cracking.

Thanks for reading, and as always, let me know what you think.

Project Officer – Assisted Reproductive Technology

Health & Research Ethics Section

National Health and Medical Research Council

GPO Box 1421

CANBERRA ACT 2601

ethics@nhmrc.gov.au

Dear Project Officer, 

Review of Part B of the Ethical Guidelines for the Use of Assisted Reproductive Technology in Clinical Practice and Research, 2007

Thank you for the opportunity to make a submission on the review of Part B of the Ethical Guidelines for the Use of Assisted Reproductive Technology in Clinical Practice and Research, 2007.

I do so as an ordinary member of the public, without any special qualification or expertise in assisted reproductive technology (ART), but with a strong interest and passionate commitment to the legal and substantive equality of lesbian, gay, bisexual, transgender and intersex (LGBTI) Australians.

I do not propose to answer all 60 of the questions contained in the public consultation document on the NHMRC website, but will instead focus my comments on those issues which are most relevant to LGBTI equality, as well as to the issue of commercial surrogacy.

In particular, I would like to make comments about the following five areas:

  1. Conscientious Objections
  2. Transmissible Infections
  3. Unknown but Directed Donations
  4. Selection for Particular Characteristics
  5. Commercial Surrogacy
  1. Conscientious Objections

My first concern is about the breadth of the description of conscientious objections in paragraph 5.9 (page 12 of the consultation document). Specifically, this paragraph provides that “[i]f any member of staff or student expresses a conscientious objection to the treatment of any individual patient or to any ART procedures conducted by the clinic, the clinic must allow him or her to withdraw from involvement in the procedure or program to which he or she objects.”

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 paragraph 5.9 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.

  1. Transmissible Infections

My second concern also relates to the breadth of provisions contained in the Guidelines, in this case paragraph 6.4 (titled Minimise risk of infection, on page 19 of the consultation document). Specifically, sub-paragraph of this section provides that “[c]linics should not accept donations from people at an increased risk of transmissible infections”.

While I acknowledge the importance of reducing the risk of transmission of communicable diseases, I believe that the wording of this sub-paragraph allows for potential misinterpretation or misapplication to prohibit donations from all people from a particular demographic group who may be over-represented in notifications for a transmissible infection (for example, men who have sex with men, who are currently disproportionately represented in HIV notifications in Australia).

This level of prohibition – at demographic group level – would ignore the particular behaviours or characteristics of the individual, which in practice make that individual more or less susceptible to transmission.

My concern is this area is founded on the ongoing exclusion of all men who engage in same-sex sexual intercourse from donating blood, irrespective of their particular behaviours or characteristics and therefore actual risk.

It is my view that any risk assessment, if deemed necessary at all, should be performed at individual level, rather than demographic group, and that the Guidelines should make this differentiation explicit in this section.

I would also note that the requirement contained in sub-paragraph 6.4.2 (that “[a]ll donors of gametes should undergo appropriate infection control surveillance”) is possibly all that is necessary to be included in this section in any event. If the individual concerned is being tested for relevant infections, and appropriate monitoring is being undertaken, then sub-paragraph 6.4.1 may in fact already be redundant.

  1. Unknown but directed donations

This concern relates to the paragraphs addressing ‘unknown but directed donation’ of both gametes (paragraph 6.9, at page 20 of the consultation document) and embryos (paragraph 7.6, at page 29).

I am strongly opposed to the recognition, even under Ethical Guidelines, of any ability of donors to restrict the use of their gametes or embryos to “certain individuals, such as those from a particular ethnic or social group.”

This creates the possibility of donors restricting the use of their gametes or embryos to people of a particular sexual orientation or gender identity (for example, to cisgender heterosexual people), and therefore to excluding other people on the basis of their sexual orientation, gender identity or intersex status. It also appears that this would allow for similar distinctions to be made on the basis of relationship status.

I note that paragraph 6.9 highlights that “[t]his type of directed donation is illegal in some jurisdictions.” I believe that it should be made illegal in all jurisdictions. The principle of non-discrimination, including non-discrimination against LGBTI people, should trump any ability of potential donors to discriminate against people on the basis of sexual orientation, gender identity, intersex status of relationship status.

Even where ‘unknown but directed donations’ are not made illegal under law, the placing of such restrictions on the donation of gametes or embryos should not be respected through these Guidelines (as they currently are in both paragraphs 6.9 and 7.6, which conclude by saying “[i]n the remaining states and territories, clinics must not use the gametes/embryos in a way that is contrary to the wishes of the donor.”)

At this point I note that there are two options to implement such a recommendation – and that is to either override any expressed discriminatory preference of the donor and provide the gametes/embryos to others irrespective of whatever qualification was sought, or to reject all such donations and ensure that their gametes/embryos are not used. I am comfortable with either outcome, as they both satisfy the principles of equality/non-discrimination, although I highlight the fact that the former would allow more gametes/embryos to be used by individuals or couples who may require them.

  1. Selection for Particular Characteristics

Paragraph 11.1 of the Ethical Guidelines (headed Do not select sex for non-medical purposes, on page 48 of the consultation document) states that “sex selection (by whatever means) must not be undertaken except to reduce the risk of transmission of a serious genetic condition”. I support the inclusion of this principle in the Guidelines.

However, I note that, in future, there exists the potential that research may create the possibility of determining the likely (or at least increased predisposition towards a specific) sexual orientation or gender identity of a child born as a result of assisted reproductive technology. I also note that, for certain groups within the umbrella term intersex (such as congenital adrenal hyperplasia, and androgen insensitivity syndrome) these diagnostic tests are already a possibility, while additional groups within intersex may be able to be determined in the future.

Given that the incredible diversity of sexual orientation (including heterosexuality, homosexuality and bisexuality), gender identity (recognizing those who are cisgender and those who are transgender) and sex (including intersex status) of human life is natural, and that all people, including LGBTI people, are equal, and should be treated as such, I believe the Guidelines should also include a prohibition on the selection of reproductive material on the basis of (likely or prospective) sexual orientation, gender identity or intersex status.

While for sexual orientation and gender identity, this scenario – the screening of embryos for such characteristics – may ultimately prove to be some years or even decades into the future, I believe that it is vital to lay down this signpost, that such discrimination will not be tolerated, now, thereby setting a precedent for if and when it is ever required. In the case of intersex status, such guidelines are necessary now, to support and recognize sex diversity.

  1. Commercial Surrogacy

Finally, I note that paragraph 13.1 of the Ethical Guidelines (on page 52 of the consultation document) states that “[i]t is ethically unacceptable to undertake or facilitate surrogate pregnancy for commercial purposes.”

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.

Thank you for taking my submission into consideration.

Sincerely,

Alastair Lawrie

20 April 2014