Surplus Embryos, Fateful Choices

By Sandra K. Dill, AM

In mid 2002, the Research Involving Embryos and Prohibition of Human Cloning Bill 2002 was tabled in the Australian Federal Parliament. It was instigated because of the promise shown for curing debilitating diseases through embryo stem cell research. The parliamentary debate focussed on the morality of embryo stem cell research and all political parties gave their members a conscience vote on the bill. Politicians argued about the definition of human life and discussed what that meant to them and what it should mean to society.

 

Assisted Reproductive Technology (ART) was also affected by the bill’s provisions, as the source of embryos for stem cell research is infertile couples’ surplus embryos. The surplus occurs either because they had completed treatment or the embryos were unsuitable for transfer back to the woman’s uterus.

 

ACCESS Australia is an independent, not for profit consumer support organisation for people experiencing infertility and their families. Patrons include Olympian Glynis Nunn Cearns OAM and Candice Reed, Australia’s first IVF baby. It seemed to us that politicians wanted to impose their personal moral views, with little thought for those of us who had created embryos to be our children. We wrote to the Prime Minister, each Member of the House of Representatives and the Senate stating the views of infertile people concerning their embryos and who should decide what was to be done with them. The choices for infertile couples are to donate their embryos to research, to allow them to expire, or to donate them to another infertile couple.

 

Several Members of Parliament quoted from our letters in their speeches. Ms. Plibersek (Member for Sydney) acknowledged that it would be wrong for parliament to make decisions about what should happen to embryos “that are so difficult to create and so precious to those parents - to not give that decision to those parents is an absolute abuse of our power in here.”¹ Others including Joe Hockey, the Minister for Small Business and Tourism, highlighted the concern that the bill would place “unnecessary controls on current IVF clinical practices” and will “affect the clinical effectiveness of IVF programs.”² Ms. Gambaro (Member for Petrie) also noted that the bill “placed some very undue restrictions on IVF.”³ Ms. Worth, Parliamentary Secretary to the Minister for Health and Ageing, was one of several who observed that “much of the opposition to stem cell research is really opposition to IVF.”⁴

 

The paranoia about the way embryos would be used was illustrated when the Member for Lowe, Mr. Murphy, declared that the true agenda in the bill was to permit the IVF industry and other companies “to use human embryos for pharmaceutical experimentation. The use of human embryos will be market driven not determined by ethical decisions.”⁵ The extent of the debate was unprecedented with 103 Members of Parliament speaking to the bill.

 

The Senate enquiry which followed was equally lively due to the parade of witnesses who were called to appear. Those who opposed the bill were sometimes careless with the facts. Several witnesses and Senators questioned the morality of creating 71,000 surplus frozen embryos. They persisted even after other witnesses, including ACCESS, explained that the 71,000 embryos were stored, not surplus, and the majority of them would be used in treatment. Senator Heffernan questioned whether IVF scientists could be trusted to comply with NHMRC guidelines through monitoring by the self regulatory body, RTAC, on prohibited uses of human embryos including human reproductive cloning and mixing animal and human gametes (egg and sperm). He suggested that in states without legislation restricting the use of human embryos, “if I were to sneak back into a lab at night somewhere, I could get away with it and no-one would know.”⁶ This was an outrageous claim given the reputation of integrity that IVF scientists in Australia have earned over the last 20 years. More puzzling is that Senator Heffernan did not explain how anyone would benefit from doing that, even if they could.

 

In my opening statement to the Senate enquiry, I addressed two matters that had caused particular distress to the infertile. The first related to concern about creating excess embryos as if doctors could somehow control this. With the greatest respect and appreciation for the expertise they bring to our endeavours to have a child, doctors do not create life. What they do is provide a safe place for the gametes to meet. They cannot control how many eggs will fertilise.

 

The second related to some witnesses who also made judgments about our attitudes to our embryos suggesting that:

 

- We had stored them like frozen vegetables.

- We treated them without respect.

- They were our sons and daughters.

- They were fodder for scientists.

- They were not ‘surplus’ but ‘unwanted’.

 

We rejected these inaccurate and misguided assumptions arguing that the opportunity for our embryos to have some added meaning would be given if we were permitted by law to donate them to embryonic stem cell research. I pointed out that this would be consistent with families who give consent for organ donation following the impending or tragic death of a loved one. The wishes of the families are rightly respected, as no one loves the deceased person more, or has a greater interest in their welfare. An IVF embryo is not a human person who would suffer in the process. It is a cluster of cells with extraordinary potential, even though over 90 percent will not result in a live birth, given the chance. It is important to note that no research may be conducted without our express consent.

 

We asked Senators to give infertile people the same rights as fertile people to act in their children’s best interests by ensuring us corresponding rights to make decisions about embryos that once had the potential to be our children⁷.

 

The bill was eventually split to remove the cloning component. The Gambaro amendment was withdrawn and the Research Involving Human Embryos Act 2002 became law on December 19th, 2002. Whether it impacts clinical IVF practice or not remains to be seen.

 

Religious concerns in relation to embryo research surround the issue of when life begins. This raises questions of how and on what basis and authority elected members of parliament legislate for ethically laden matters such as IVF in which a diversity of opinions will be found and in which strongly diverging positions are adopted. This is not the same as how a group within society, such as a church or denomination or major faith make decisions that they will regard as binding on members. While society may impinge on our lives in many ways, we question whether the autonomous rights of a single national regulator will outweigh the autonomies and rights of potential parents or the health professionals who care for them.

 

It is important to note that there is a diversity of theological perspective and opinion about this, even within faiths. The different views expressed by the Anglican primate, and his archbishop in the Sydney diocese, is one example. Many people, including those of us who have had stored embryos, disagree courteously and respectfully, and in a fully informed way, with those who in effect grant the value of substantive personal identity to the fertilised oocyte from its first moments. To suggest that an embryo is likely to become a person is misguided. In the natural order of things, over 90 per cent of fertilized ova simply succumb in their first few days, invisible, unnoticed, unremarked, unknown and unknowable⁸.

 

ACCESS believes that this diversity, whether faith-based or otherwise should be respected, as should the wishes of the couples for whom these embryos were created. During his tenure as former US Surgeon General, C. Everett Koop, a Christian, argued that personal moral beliefs should not automatically be enacted into laws enforced by the State⁹.

 

Some have accused us of ‘playing God’. We suggest that ‘playing God’ is what careful, responsible, ordinary people have to do in a modern society.

It is an unavoidable part of life[1]. Those of us who have created embryos have grappled with the ethical and social implications of what to do with them because we must. They are ultimately our responsibility. Then we live with the decisions we make about them. We care about the fate of the embryos that were created to be our children, to see that their existence has had some meaning. We do not believe that to use them for research would be disrespectful, quite the contrary. For many couples, the opportunity to donate their embryos for ART or embryo stem cell research gives them some added meaning, as they contribute to scientific knowledge that will lead to improvements in ART practice and ease human suffering. No one else values or respects these embryos more. We value life and we value children, which is why we have been prepared to go through extensive investigations and treatment to try to create a family.

Sandra is Chief Executive Officer of ACCESS, Australia’s National Infertility Network, Chair of the International Consumer Support for Infertility (iCSi) patient leader network, Coordinator, ESHRE Patient Leader Forum (EPLF), Board Member, International Alliance of Patient Organizations (IAPO) and Chair of the ACT Global Outreach Initiative. She can be contacted at: sandra.d@access.org.au )

 

[1]. House of Representatives Hansard 20/8/2002 p.5157

2. House of Representatives Hansard 21/8/2002 p.5203

3. House of Representatives Hansard 21/8/2002 p.5209

4. House of Representatives Hansard 21/8/2002 p.5194

5. House of Representatives Hansard 22/8/2002 p.5296

6. Senate Committee Hansard 29/8/2002 p. CA2

7. Senate Committee Hansard 26/9/2002 p. CA269

8. Head I., Warden, St Paul’s College, University of Sydney, personal discussion.

9. Yancey P, Soul Survivor, How my faith survived the church,(2001) Hodder & Stoughton, London

10. Dutney A, Playing God (2001) Harper Collins, Melbourne.