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

Advertisements

No 2 Australia Finally Adopts Federal Anti-Discrimination Protections for Lesbian, Gay, Bisexual, Transgender and Intersex People

I have already written about the significance of this achievement (link: https://alastairlawrie.net/2013/06/30/federal-lgbti-anti-discrimination-protections-at-last/), so I won’t go into a lot of new detail here.

Still, as far as highlights of 2013 go, it would be pretty difficult to overlook the passage of the Sex Discrimination Amendment (Sexual Orientation, Gender Identity and Intersex Status) Act in June. From 1 August, LGBTI people in Australia finally had anti-discrimination protections under federal law. And we only had to wait 38 years after the Racial Discrimination Act, and 29 years since the original Sex Discrimination Act (and yes, that was sarcastic – the passage of this Bill was long, long overdue).

There were two particular aspects of the Sex Discrimination Amendment Act that warrant particular celebration. First, it is the first anti-discrimination law passed anywhere in the world to explicitly include intersex people. That is a pretty amazing achievement, and another testament to the great work and advocacy by OII Australia and other groups.

Second, the legislation includes an amendment that means aged care service providers operated by religious organisations are not legally allowed to discriminate against LGBTI people accessing their services. Again, this is a significant victory, and will help to ensure the generation of LGBTI people who fought so hard – and successfully – for our civil rights, have the opportunity to grow old with dignity.

Nevertheless, the fact that a special ‘carve-out’ is necessary for aged care service delivery by religious organisations emphasises the major weakness of the anti-discrimination protections that were passed: schools, hospitals and other community service organisations that are run by religious groups are legally allowed to discriminate against lesbian, gay, bisexual and transgender people, both employees and service recipients (NB religious organisations do not have exceptions allowing them to discriminate against intersex people).

These religious exemptions or exceptions are contrary to the fundamental concept of anti-discrimination law – that people should not be discriminated against for things that are irrelevant to their capacity to perform a job, or their right to access a service.

Fighting to remove these religious exceptions will be the biggest test for LGBTI advocates and activists over the next 5, 10 or even15 years (achieving marriage equality will likely turn out to be both easier, and quicker, than removing religious exceptions, and religious organisations will probably fight much harder to retain them than to retain a discriminatory Marriage Act).

Still, fight them we must, because for however long a religious school can sack a teacher for being gay or bisexual, or a service organisation can refuse to provide that service because the intended recipient is transgender, then we are not truly equal.

As an indication of how difficult this fight will be, I am re-posting the exchange between myself, now Attorney-General George Brandis and Tony Jones on #QandA back in June, the night before the legislation, including the aged care carve-out, was passed (and, no this is not just – well, not entirely – because I had so much fun doing this):

ALASTAIR LAWRIE: My question is to Senator Brandis. Last Tuesday you announced that the Coalition would block any LGBTI anti-discrimination bill that did not allow religious aged-care service providers to discriminate on the basis of sexual orientation and gender identity. This is despite the fact that these agencies themselves do not believe they need this exception. You seem to be putting a theoretical religious freedom above practical protections. Why don’t you believe that older lesbians, gay men, bisexuals and transgender Australians, people who have grown up when their love was criminalised, who lost friends and lovers to HIV and AIDS, have the right to grow old in dignity and respect that they deserve?

GEORGE BRANDIS: It is a very important question that you ask and let me explain what the Opposition’s position is. But there was one statement in your question which wasn’t quite right. You said that the religious institutions, the churches, didn’t themselves want the exemption so far as concerned aged care facilities. That’s not right. Some said they didn’t want it. Most said they did. So don’t be misled by a misleading statement by the Attorney-General. On the broader issue, when the bill, the sex discrimination bill, was introduced into the Parliament, I took a submission to the Shadow Cabinet and to our party room which was, I think without a dissenting voice, endorsed that we should support it. And the reason we support it is because it is actually the policy we took to the 2010 election, that the provisions of the Sex Discrimination Act should extend to sexuality as a protected attribute. The Government knew that they had the Opposition on board with this. In fact, the Government’s measure was itself taken from the Opposition’s report on the broader human rights and anti-discrimination bill, the bill that was abandoned by the Government earlier this year because it was acknowledged to have gone way too far. So we had, on this very tricky and important issue of discrimination against gay people, we had bipartisanship and unanimity. And then into the middle of this harmonious bipartisan moment, the Labor Party, out of the blue, threw in an amendment never anticipated, never expected, that would have caused the religious exemption issue to come into play. Now, if you want to build a consensus around this issue, that gay people should be protected from discrimination by the Sex Discrimination Act, then you would not have done that and the Labor Party, on all other grounds, in all other arenas, has said that it will respect the religious exemption. I am cynical about why the Labor Party did that…

TONY JONES: Okay, George.

GEORGE BRANDIS: …knowing that by introducing the religious exemption, it would make it impossible for that bipartisanship to continue.

TONY JONES: George Brandis, the questioner has his hand up so we’ll go back to you.

ALASTAIR LAWRIE: I would just like to pick up a point you seem to be making. In Senator Humphrey’s dissenting report to the sex discrimination senate inquiry, the two organisations that he quoted justifying the call for religious exception in that circumstance were the Australian Christian Lobby and the Catholic Women’s League. Neither of them provide religious aged care services. So in that circumstance, why are we trying to impose a religious exception to the detriment of older LGBT people for those groups that don’t actually run those services?

GEORGE BRANDIS: Well, I’m very familiar with that minority report because I was one of the signatories to it and I had a lot to do with drafting it. There were many more submissions to the inquiry from other churches and religious institutions than those two. So don’t infer that because those two were mentioned as a ‘For example’, those were the only ones, because they weren’t.

TONY JONES: Okay. George, I would like the hear other people on this subject. Anne Summers?

ANN SUMMERS: Well, I’m afraid I don’t know much about the legislation. I mean I just obviously would support the principle that LGBT people should be able to go to retirement homes and nursing homes free from any form of discrimination, which I take to be the central point and I know that, you know, one of the problems with homes that are run by some religions is they have been discriminatory in the past and I imagine what we are trying to avoid is the continuation of that discrimination and I would support that.

TONY JONES: Yeah, very briefly, George, before I go back to the other panelists, shouldn’t anti-discrimination be universal?

GEORGE BRANDIS: No.

TONY JONES: Why shouldn’t it?

GEORGE BRANDIS: Anti-discrimination laws should not be universal because the right to fair treatment is one of several very important but sometimes inconsistent values. The right of people who practice or profess a particular religious faith to live their lives and to conduct their institutions in accordance with the precepts of their religious faith is integral to religious freedom and religious freedom is also a fundamentally important value.

TONY JONES: So religious…

GEORGE BRANDIS: And if I may say…

TONY JONES: But just on principle, you are saying that religious freedom supersedes the freedom of your sexuality?

 

 

GEORGE BRANDIS: Yes, I am, as a matter of fact. Yes, I am. But I am also making a political point. There are – we in the Liberal Party have joined with people in the Labor Party to progress this agenda for years and those who wanted to see the Sex Discrimination Act extend to protect people on the grounds of their sexuality were furious that the Labor Party decided to throw in a curve ball into the debate that deprived the country of the opportunity for unanimity on this. [emphasis added].

 

That exchange, and especially Senator Brandis’ statement that religious freedoms clearly trump our right to not be discriminated against, show just how hard this battle will be.

Underscoring this point is Attorney-General Brandis’ recent appointment of Tim Wilson as a new Human Rights Commissioner, responsible for promoting ‘traditional freedoms’. Recruited from the right-wing Institute of Public Affairs, on 23 January this year Mr Wilson appeared at a Senate hearing into the then draft Human Rights and Anti-Discrimination Bill (transcript here: http://parlinfo.aph.gov.au/parlInfo/download/committees/commsen/8eb3bdec-c603-4d2d-9564-674c7bd7b5c2/toc_pdf/Legal%20and%20Constitutional%20Affairs%20Legislation%20Committee_2013_01_23_1612_Official.pdf;fileType=application%2Fpdf#search=%22committees/commsen/8eb3bdec-c603-4d2d-9564-674c7bd7b5c2/0000%22).

During his testimony, he argued that anti-discrimination protections should only apply to government employees and services – basically, that anti-discrimination law should not protect people from being fired for being gay, or being expelled for being a lesbian, or being denied a service for being bisexual, transgender or intersex. Given the extremity of these views, if this is any indication of how Attorney-General Brandis will approach anti-discrimination reforms then we will need to be prepared to fight any moves to wind back our hard-won protections in 2014.

In the meantime, the passage of the Sex Discrimination Amendment (Sexual Orientation, Gender Identity and Intersex Status) Act 2013 will stand as the most significant LGBTI victory of the past 12 months. Thank you to the former Labor Government, then Attorney-General Mark Dreyfus, Senators Penny Wong and Louise Pratt and everyone else who helped to make this happen.

No 3 Senate Report on Involuntary or Coerced Sterilisation of Intersex People in Australia

Another development during 2013 which was, frankly, far more important than anything related to marriage equality was the Senate Standing Committee on Community Affairs’ Report on Involuntary or Coerced Sterilisation of Intersex People in Australia, handed down on 25 October (link here: http://www.aph.gov.au/Parliamentary_Business/Committees/Senate/Community_Affairs/Involuntary_Sterilisation/Sec_Report/~/media/Committees/Senate/committee/clac_ctte/involuntary_sterilisation/second_report/report.ashx).

For people unaware (as, being perfectly honest, I was until around this time last year), the vast majority of intersex children are subjected to involuntary surgeries shortly after birth, designed to ‘normalise’ them according to the expectations of either their parents, their doctors, or society at large (or, more likely, a combination of all three) that they should conform to a man/woman binary model of sex.

These surgeries, obviously performed without the infant/child’s consent, can involve sterilisation, as well as other ‘cosmetic’ (ie unnecessary), largely irreversible surgery on genitalia to make it fit within the idea of what a man or woman ‘should’ be (completely ignoring the fact that the infant doesn’t fit into that model, nor should that model be imposed upon them, and certainly not without their informed consent).

The fact that these surgeries continue to the present day is a major human rights scandal. The idea that people are having such major, lifelong decisions made for them by doctors and parents (who are often persuaded by the views of the medical profession) is a horrifying one.

It is something that groups like Organisation Intersex International Australia (OII Australia), and others have been campaigning on for some time. And in 2013 the members of the Senate Standing Committee on Community Affairs were listening.

They commenced an inquiry on September 20 2012, looking at the general topic of involuntary or coerced sterilisation of people with disabilities in Australia. Through the course of this inquiry, and the advocacy of groups like OII Australia, they came to see the significance of the continuing violation of the rights, including the bodily integrity, of young intersex people.

So much so, that they separated out the issues surrounding intersex people and, after handing down their general report on 17 July 2013, devoted a second report entirely to these issues. In their conclusion, they made some very encouraging observations about the need to break down the barriers of thinking around sex. In particular, they noted:

“ 6.29      Least well understood is the challenge that intersex variation presents to the rest of society. It is the challenge involved in recognising that genetic diversity is not a problem in itself; that we should not try to ‘normalise’ people who look different, if there is no medical necessity. It is the challenge of understanding that everyone does not have to fit into fixed binary models of sex and gender, and that nature certainly does not do so.

6.30      A key example of our lack of understanding of how to respond to intersex diversity can be seen in the clinical research on sex and gender of intersex people. The medical understanding of intersex is so strongly focussed on binary sex and gender that, even though its subjects have some sort of sex or gender ambiguity, the committee is unaware of any evidence to show that there are poor clinical or social outcomes from not assigning a sex to intersex infants.[19] Why? Because it appears never to have even been considered or researched. Enormous effort has gone into assigning and ‘normalising’ sex: none has gone into asking whether this is necessary or beneficial. Given the extremely complex and risky medical treatments that are sometimes involved, this appears extremely unfortunate. [emphasis added]”

 

Which is a pretty radical sentiment for a cross-party group of Senators to put their names to. The Committee also made recommendations designed to at least reduce the incidence of coerced sterilization (and surgery on genitalia), as well as increasing the support available to parents of intersex children. Specifically:

3.130    The committee recommends that all medical treatment of intersex people take place under guidelines that ensure treatment is managed by multidisciplinary teams within a human rights framework. The guidelines should favour deferral of normalising treatment until the person can give fully informed consent, and seek to minimise surgical intervention on infants undertaken for primarily psychosocial reasons. [emphasis added]

 

Recommendation 11

5.70    The committee recommends that the provision of information about intersex support groups to both parents/families and the patient be a mandatory part of the health care management of intersex cases.

Recommendation 12

5.72    The committee recommends that intersex support groups be core funded to provide support and information to patients, parents, families and health professionals in all intersex cases.”

These recommendations, and the Report more broadly, have been received positively by the National LGBTI Health Alliance, and by OII Australia, who released a statement responding to the report on 29 October (link here: http://oii.org.au/24058/statement-senate-report-involuntary-or-coerced-sterilisation-intersex-people/). OII President Morgan Carpenter said:

“This report represents the first opportunity, after many years of campaigning, to place our most serious human rights concerns before Parliament. Medical interventions on intersex infants, children and adolescents have been taking place in Australia with insufficient medical evidence, and insufficient emphasis placed on the human rights of the child and future adult. Genital surgeries and sterilisations create lifelong patients and there’s significant evidence of trauma.

At a first view, many of the headline conclusions and recommendations are positive – accepting our recommendations on minimising genital surgery, concern over the lack of adequate data, insufficient psychosocial support, and concern that decision making on cancer risk is insufficiently disentangled from wider concerns about a person’s intersex status itself; we also broadly welcome the recommendations relating to the prenatal use of Dexamethasone” and, went on to say:

 

“OII Australia warmly welcomes this crucial report. It addresses the main concerns of the intersex community. We welcome that this is a joint report with cross-party support, and we would like to thank the Committee members and staff for their hard work.

We also give particular thanks to our friends in the Androgen Insensitivity Syndrome Support Group Australia (AISSGA), the National LGBTI Health Alliance, and the other people and organisations who took time to make relevant submissions to the inquiry, or who participated in the hearing on intersex issues.

We look forward to working with clinicians, Commonwealth and State and Territory Health Departments, and the Commonwealth Attorney General’s Department, to improve health outcomes for intersex infants, children, adolescents and adults.”

Which is I guess the crucial point – it is up to multiple levels of Government, and the health profession, to implement the Committee’s recommendations, and make substantial (and long overdue) improvements in this area. And it is up to groups like OII Australia – together with support from their allies throughout the LGBTI, and wider, community – to make sure that they do.

Submission to Involuntary and Coerced Sterilisation Senate Inquiry

Last week, in amongst the craziness of the Sex Discrimination Amendment Bill, and the US Supreme Court marriage equality decisions, the Organisation Intersex International (OII) Australia put out the call for people to make submissions to the Senate Community Affairs Committee Inquiry into the Involuntary and Coerced Sterilisation of People with Disabilities in Australia.

So, on Saturday afternoon I put together the below submission. Given the rush it is admittedly not my best work, but I am glad to have put something in with respect to this important inquiry, and today OII Australia tweeted that they appreciated my effort, so that’s good enough for me. The submission was published on the Senate’s website this morning, so here it is:

I would like to make a brief submission in relation to this important inquiry.

Specifically, in my submission I will address the second term of reference for the inquiry, namely:

2. Current practices and policies relating to the involuntary or coerced sterilisation of intersex people, including

a) sexual health and reproductive issues; and

b) the impacts on intersex people.

In doing so, I will be drawing heavily on the submission provided by the Organisation Intersex International Australia.

I am writing this submission as a gay man, and someone who does not have any personal experience of what it is like to be an intersex individual. However, that does not mean I cannot recognise the fundamental human rights of others, or support broad principles according to which each and every person should be able to live their life.

These principles include the right to personal autonomy – to have physical control over one’s body – including the right to determine whether to consent, or not to consent, to medical procedures (wherever possible). This is especially important for procedures which can have long-term, and often permanent or irreversible, impact on core matters such as sex and reproduction. These principles also include the right for individuals to be different, including differences of sexual orientation, gender identity and intersex status, and for these differences to be respected by the medical profession, the Government and society at large.

Sadly, it seems that for far too many intersex Australians they have been unable to live their lives with the benefit of these principles or rights.

It is disturbing to read the following quote from pages 3 and 4 of the OII submission dated 15 February 2013:

“Every individual member of OII Australia has experienced some form of non-consensual medical intervention, including the following:

  • Pressure to conform to gender norms and to be a “real man” or “real woman”.
  • Involuntary gonadectomy (sterilisation) and clitorectomy (clitoris removal or reduction) as an infant, child or adolescent.
  • Medical and familial pressure to take hormone treatment.
  • Medical and familial pressure to undertake genital “normalisation” surgery.
  • Surgical intervention that went outside the terms of consent, including surgery that was normalising without consent.
  • Disclosure of non-relevant medical data to third parties without consent.”

For any individual to experience any of these interventions is disturbing. That every member of OII Australia has experience of at least one (and possibly more than one) is genuinely shocking.

That is why I have no compunction in backing the recommendations made by OII in their submission. In particular, I support their Medical protocol recommendations on pages 20 and 21, namely:

“1. Medical intervention should not assume crisis in our difference, nor normalisation as a goal.

2. Medical, and in particular surgical, interventions must have a clear ethical basis, supported by evidence of long term benefit.

3. Data must be recorded on intersex births, assignments of sex of rearing, and of surgical interventions.

4. Medical interventions should not be based on psychosocial adjustment or genital appearance.

5. Medical intervention should be deferred wherever possible until the patient is able to freely give full and informed consent; this is known as the “Gillick competence.”

6. Necessary medical intervention on minors should preserve the potential for different life paths and identities until the patient is old enough to consent.

7. The framework for medical intervention should not infantilise intersex, failing to recognise that we become adults, or that we have health needs as adults.

8. The framework for medical intervention must not pathologies intersex through the use of stigmatising language.

9. Medical protocols must mandate continual dialogue with intersex organisations.”

I also endorse their call for a review of terminations on the basis of intersex differences – as intersex status should not be used as the basis for an otherwise undesired termination (in the same way that, if pre-natal tests were to become available at a later date to determine homosexuality, bisexuality or transgender status, I would ethically object to these tests being used as the basis for terminations).

Similarly, I support OII Australia’s call for a review of the use of off-label use of dexamethasone (and note with concern the possibility that this steroid could be used to prevent physical masculanisation and to “prevent homosexuality” – as highlighted on page 11 of the OII Australia submission).

I also have no qualms in supporting their Legal recommendations on page 21:

“We wish to live in a society where we are not obliged to conform to binary sex and gender expectations, where our biological distinctiveness is not treated as it it’s an errant behaviour, where we are protected despite our innate differences, and where intersex people are also not singled out or “othered” as a class. We wish to live in a society where our sex assignments are mutable, and not problematized, and where we (and others) can choose to remain silent on the matter of our sex, through an “unspecified” sex classification.

We seek recognition that our treatment by the medical profession and by the state is a human rights issue. We seek explicit inclusion in human rights and anti-discrimination legislation on the basis of our biological distinctiveness, without our having to submit either to medical intervention, nor a requirement that we “genuinely” identify as one gender or another.”

Of course, it is pleasing to observe that at least some of these recommendations have been achieved since that submission was written, with the passage this week of the Sex Discrimination Amendment (Sexual Orientation, Gender Identity and Intersex Status) Bill 2013, as well as the recent release of the Australian Government Guidelines on the Recognition of Sex and Gender. But other work, especially with the medical profession, remains to be implemented.

Finally, I would like to strongly endorse the Community support recommendations of OII Australia on page 21 of their submission. The recent history of OII Australia demonstrates that it has had incredible success in firstly, drawing attention to some important, but hitherto largely ignored, human rights issues and secondly, to achieving some key victories (such as the recent passage of federal anti-discrimination protections, which was a world first at federal level).

The fact that it has done so as a small, member and volunteer-run organisation, with no government funding, is truly impressive. With many issues yet to be resolved, hopefully the Commonwealth can see fit to provide an ongoing funding source for OII Australia.