The DCSG represents donor conception families throughout Australia . In June of this year members of our group met with Northern Territory Senator Trish Crossin and we discussed the following matters.

Summary

The Issues

• There are probably in excess of 60,000 people in Australia born from donor conception ranging in age from babies to the very elderly. The vast majority of them know nothing about their donors.

The vast majority of donor conceived people do not:

• have access to proper family medical histories.
• know the identity of their biological father (in the case of donated sperm), mother (in the case of donated eggs), or both parents (in the case of donated embryos).
• know the identities, age or sex of their donor siblings.

•  Adoptees were given the right to know the identities of their biological parents decades ago; the adoption laws were made retrospective out of respect for the needs of adopted persons to know their identities.

What needs to be done

• National Health & Medical Research Committee “Ethical guidelines on the use of assisted reproductive technology in clinical practice and research” are not enough – we are not assured that they are being followed and the rights of donor conceived people to know who they are related to should be enshrined in law.
• A National register should be established to protect donor records and allow all donor conceived people to access information on their donors and half siblings.
• Clinics using reproductive technology to create living human beings should be overseen by an independent committee that reports to the Federal Government.

Senator Crossin has let us know that she will be doing everything she can to forward our issues and we are hoping that we will have the support of all political parties in progressing these serious issues in the Federal Parliament.

We are asking if you would like to take part in a group to discuss the issues that we have raised in this letter and help us forward the rights of all donor conceived people.

In the next part of our letter to you we will discuss some of the most important matters that donor conceived people face.

How many people are born from donated gametes?

In Australia we are not really sure how many people have been born from donated sperm, eggs & embryos because proper records have never been kept.

•  First official clinic performing donor insemination (D.I.) was in Victoria (1970) but private practitioners were performing D.I. for at least 3 decades before this.

•  It was quoted in 1982 that there were about 10,000 children under the age of 15 in Australia who had been born by donor insemination.

•  We estimate that there is now in excess of 60,000 people in Australia born from donor conception ranging in age from babies to the very elderly.

•  The number of people affected by donor conception is not confined to those conceived by donated gametes but also includes parents, donors (also their partners & children), those that form relationships with donor offspring plus their children and so the number affected by donor conception now rises into the hundreds of thousands.

People born from donated gametes are discriminated against

Most donor conceived people in Australia :

• Do not have access to proper family medical histories.
• Do not know the identity of their biological father (in the case of donated sperm), mother (in the case of donated eggs), or both parents (in the case of donated embryos).
• Do not know the identities, age or sex of their donor siblings.

It is not that this information, for the most part, is unknown, the clinics or doctors who recruited the donors and performed the procedures to create these people have the information but they choose to deny this information to the people they helped create.

Cleo Doig, 25, of Western Australia, is a child born of donor sperm who feels "angry every day when I think of the rights I am denied. My mother used an anonymous donor. We know only that he was possibly a medical student, possibly a musician. Her doctor told her he didn't keep any more information and to me that's a betrayal of my rights to know myself."

I feel access to our genetic information, medical history and indeed family is so obviously necessary that I can barely cope with talking to anyone who thinks differently. DI offspring are the only current group of people who are denied this right due to the convenience of everyone other than themselves.

We are creating different classes of donor conceived people in Australia all based on where and when they were conceived. The flow chart below gives some indication of the complex nature of getting donor information in Australia .

Donor Conceived person looking for information

The Australian Government ratified the United Nations Convention on the Rights of the Child (UNCROC) in December 1990 and it became binding on Australia in January 1991. The UNICEF Implementation Handbook (2002) for the Convention on the Rights of the Child asks questions about how countries are implementing UNCROC

Does domestic law and administrative practice ensure that the identities of children's parents (including genetic parents, birth mother and caring parents) are accurately recorded and preserved?

Do children have the right to know from the earliest date possible the truth about the particular circumstances of their parenting (for example by adoption or by an artificial form of conception)?

Do all children, including adopted children and children conceived by artificial forms of conception, have the right to know, as far as possible, who their genetic parents are?

  Not having access to information about donors and half siblings is also a violation of the Human Rights of donor conceived people as described in the International Covenant on Civil and Political Rights to which Australia is a signatory.

“All persons be guaranteed equal & effective protection under the law against discrimination on any ground such as race, colour, sex, language, religion, or other opinions, natural or social origin, property, birth or other status.”

Donor conceived people are discriminated against on the grounds of their birth.

Consanguinity

Many donor conceived people grow up with a nagging fear that they may meet and form a relationship with someone who has the same biological parent/s.

(Leonie Hewitt) has discovered one of her children has 28 half-siblings from the same father and 20 of them probably are in South Australia . "Adelaide is a big country town," Ms Hewitt said. "My concern is that one of them could enter a relationship with one of their half-siblings.

Lucinda, who has known about her DI conception (using an anonymous donor) since she was 13, says that the prospect of ‘falling in love or having a sexual relationship with a possible half-brother just freaks me out'. Sexual relationships between unwitting siblings concerned parents and offspring.

“It concerns me that male friends I become involved with may be siblings, either fellow D.I. offspring or sons of the donor. Before you start to think that it is unlikely that I will ever meet or possibly fall in love with, one of my siblings or even another D.I. offspring, think again. One of my close school friends, a girl who was in classes with me all through high school, was also conceived from D.I. Imagine if she was a male. Imagine that he was conceived from the same donor.

  Anonymity & Donors

Anonymity is not something that was originally guaranteed by statute; it was a private arrangement between the donor and the clinic, parents had to agree to it in order to have a child and the vast majority had no idea of the huge implications this might have on their children. Donors who wanted to help infertile people also had to agree to it or they would not be accepted as donors.

Before states created adoption laws people who gave up their children for adoption were also promised that their identity would be preserved. But in the adoption debates held around the country, some as long ago as 25 years, it was accepted that the right to know about your genetic origins and heritage overrode any concerns about the right of relinquishing parents to privacy. It was also agreed that it should apply to ALL adopted children regardless of WHEN they were adopted. In other words these laws were retrospective.

The fears some had at the time that there would be serious problems with giving this right to adoptees was unfounded. What happened around Australia was that adoptees and their biological parents handled things responsibly and carefully, usually with the help of mediators. Many people had feared that the Adoption Information Act would impinge on a person's right to privacy. However, to date (2002) there have been no breaches of the contact veto. WHY WOULD DONOR CONCEIVED ADULTS BE ANY DIFFERENT?

It is one matter, ethically, for children not to know their genetic identity as a result of unintended circumstances. It is quite another to deliberately destroy children's links to their biological parents, and for society to be complicit in this destruction.

  Why the National Health & Medical Research Committee “Ethical guidelines on the use of assisted reproductive technology in clinical practice and research” is not enough

The DCSG applauded the release of the revised NHMRC guidelines in 2004. We were assured that clinics would be abiding by these guidelines by the beginning of 2005. Since then we have had very serious concerns about the compliance rates of clinics.

Infertility clinics are accredited by the Reproductive Technology Accreditation Committee (RTAC) which is a sub-committee of the Fertility Society of Australia (FSA). RTAC like the FSA is made up of Professionals working in the area of infertility. The Federal Government has allowed the FSA and RTAC to decide whether a clinic is accredited for Medicare funding.

Our group has no way of knowing if clinics are abiding by these guidelines because there is no transparency to the accreditation process. We have had people call us telling us that they had been offered anonymous sperm even after the new guidelines prohibiting this had come into force.

We also know that clinics are not abiding by Article 6.1.3 of the NHMRC Guidelines which states:

6.1.3 Working with relevant professional organisations, clinics should use forums for public information to encourage people who were donors before the introduction of these guidelines, and those previously conceived using donated gametes, to contact the clinic and register their consent to being contacted by their genetic children or genetic siblings and half-siblings, respectively.

The DCSG has never been contacted by any clinic in Australia to help them encourage past donors to come forward. Our group has been in operation since 1993 and would have more contact with donors and donor offspring than any other group in the country. We have also never seen any clinic (except for the Royal Hospital for Women in Sydney which is the only clinic in Australia to set up its' own register – set up before the NHMRC Guidelines were released) use any form of public information to encourage past donors to contact them.

Associate Professor Bernadette Tobin, Director of the Plunkett Centre for Ethics, and a person who has sat on many committees looking at reproductive technology, claimed at the Sydney hearings of the NHMRC Legislation Review Committee that RTAC does not monitor compliance with ethical guidelines and that this is a serious gap in the system:

The Fertility Society of Australia 's Reproductive Technology Accreditation Committee does not monitor compliance with ethical guidelines … Nor do individual Human Research Ethics Committees: they are too busy, and their membership is not appropriate for monitoring compliance with ethical guidelines. There is, thus, a significant gap in the arrangements for monitoring the compliance of IVF clinics with ethical guidelines.

NHMRC Embryo Research Licensing Committee

The Embryo Research Licensing Committee of the NHMRC (the NHMRC Licensing Committee), is a Principal Committee of the NHMRC, it was established by the Research Involving Human Embryos Act 2002 .

T he Licensing Committee oversees the Research Involving Human Embryos Act 2002 and the Prohibition of Human Cloning for Reproduction Act 2002 . The legislation prohibits human cloning for reproductive purposes and a range of other practices relating to reproductive technology. It also regulates research activities that involve the use of human embryos created by assisted reproductive technology (ART) or by other means.

The Act also requires the committee to table six monthly reports in either House of Parliament on or before 30 June and 31 December each year, and at any other time as required by either House of Parliament. The reports must include information about both the operation of this Act and licences issued under the Act. Here we have a committee which must make public reports about research which is being done on embryos which will never become living human beings but there is no independent committee overseeing or giving reports about the fertility industry when it is creating living, breathing people.

Can the Federal Government legislate in the area of assisted reproductive technology?

The DCSG has previously been told that the government cannot legislate in the area of assisted reproductive technology because it is a health related matter and health legislation is dealt with by the states.

We would argue that this is definitely not always the case; for example the Prohibition of Human Cloning for Reproduction Act 2002 and the Research Involving Human Embryos Act 2002. In the Prohibition of Human Cloning Act there is a section which deals with a procedure that is allowed in many countries overseas in order for some infertile people to have children.

Offence—creating or developing a human embryo containing genetic material provided by more than 2 persons

A person commits an offence if:

The person intentionally creates or develops a human embryo by a process other than the fertilisation of a human egg by a human sperm; and the human embryo contains genetic material provided by more than 2 persons;

  This is a very clear example of the Federal Government dealing with assisted reproductive technology.

The Federal Government funds infertility services through Medicare; this makes the Government a partner in the creation of children by donated sperm, eggs & embryos.

Medicare figures show that the Commonwealth paid out $220 million in benefits for IVF-related treatments during the 2006-07 and 2005-06 financial years.

For the Federal Government to legislate in the area of donor conception may well be quite acceptable for most states. The Attorney General of Victoria, Robb Hulls said in parliament in May of this year:

  With over 6000 children born each year across Australia through the use of ART, a national approach to the collection of, and access to donor information is becoming increasingly important.

Will we lose donors if we legislate?

In 1998 Victoria stopped the use of anonymous sperm. Figures reported by the Victorian Infertility Treatment Authority clearly show that donors were not put off by legislation.

In 1997 Victoria had sperm from 174 donors in storage; after legislation came into force this jumped to 202 in 1998. This meant that most of the pre-legislation donors had signed consent forms showing they were willing to now be identified plus more new donors also came forward.

All clinics around Australia have at different times experienced shortages of donors but if they advertise donors usually volunteer as this example shows:

In January, the Age reported that Monash IVF had written to Victoria 's male state MPs under 45, urging them to become donors to help replenish sperm bank supplies. The idea was to encourage other men to lend a hand.

While no politicians have yet responded to the challenge, the reproductive service received 70 inquiries from men, of which 14 have volunteered their sperm.

Monash IVF medical director Gab Kovacs was delighted with the response. "To get 70 inquiries is really remarkable, and 14 out of 70 is a very good conversion rate,"

One of the main reasons people choose donor conception over adoption is the desire to have some genetic connection with their children, is it not then very reasonable to assume that these same children will have a strong desire to investigate their own genetic connections. I don't think that anyone has the right to make that decision for them.

In contrast to Victoria , South Australia which has had donor anonymity enshrined in legislation for some time suffers from a lack of donors.

Secrecy & Donor Conception

Even though donor conception is not a new reproductive technology it is still shrouded in secrecy. Very few people will admit using it to create their families and donor offspring will rarely speak publicly. This is eerily similar to the situation in adoption before legislation gave adoptees the right to have information about their biological parents. Most countries, like Australia , base their whole system of justice and way of life on honesty. Current legislation discourages parents from being honest with their children. Many parents with donor conceived children find it hard to tell the truth to their children when they have no information about the donor.

  Adrienne has a 30 year old son, but she has been keeping a secret from him for his entire life. Her husband is infertile and her son was conceived using donor sperm. Keeping this secret has been a burden and she wants to be honest with him, not least for the sake of his medical history and identity. She decides that she will find out information about his biological father before she tells her son the truth. She contacts the relevant Victorian agency, the Infertility Treatment Authority but is shocked to discover that because her son was born before 1988 she is not entitled to receive any information. She is desperate to tell her son the story of his identity, but fearful of doing so without being able to offer any information for the inevitable questions that will follow. She doesn't know what to do.

There is a need for Federal legislation to give donor conceived people the right to information which the rest of us take for granted.

I wrote down the (donor) information on a little piece of notebook paper right away. I still to this day carry it in my wallet as a memento of who this man is, even though he might be a lot different now. He might not even be alive, in reality, I know this and some people think it's something they should point out to me (as though I haven't thought of all the possibilities, including that he was abducted by aliens!), but I never give up hope. It's all I have to keep me on this journey.

Thank you for taking the time to read this document, we look forward to hearing from you.

Yours Sincerely,

Caroline Lorbach

National Consumer Advocate email dcsg&optusmet.com.au

Donor Conception Support Group of Australia Inc.

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LRC550)http://www.nhmrc.gov.au/research/embryos/review/_files/lrc_report_part_b_19dec05.pdf Dr Tobin is Honorary Ethicist at the Children's Hospital at Westmead, Honorary Associate Professor in the Faculty of Medicine at the University of Sydney , and Conjoint Associate Professor in the School of Medicine at the University of New South Wales . She served for three triennia on the Australian Health Ethics Committee, a principal committee of the NHMRC.

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ibid

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