Disability and reproductive rights in NZ

Difficult Decisions: Disability and reproductive rights in New Zealand

by Anna Friedlander

Advances in science have borne us technologies which would have once been almost unimaginable.

With technological development comes the capacity to increase our control over our lives and destinies, and those of others: the invention of the printing press in the early fifteenth century allowed the mass production of books and pamphlets which helped democratise literacy; the discovery of insulin in the 1920s has saved the lives of countless diabetics.

Of course, technology is not an unmitigated force for good—it has the power to hinder as well as help; to destroy as well as create. The atomic bomb allowed humankind to kill on a scale never before possible. With the development of large-scale industry dependant on fossil fuels has come a human impact on the environment that might one day make the Earth uninhabitable.

With great power comes great ethical dilemma. This is especially true when a technology has the potential to profoundly affect a vulnerable population in our society.

Reproductive science and technology has developed immensely since Egyptian women used honey and oil to prevent pregnancy. Antenatal testing has meant women have much more information about the health of their unborn child than was once possible, and in-vitro fertilisation (IVF) has allowed individuals and couples who would have otherwise been unable to conceive to do so.

But these technologies have not been without debate or controversy. Some people argue screening for disabilities with a strong genetic component in the fetuses of pregnant women and in the embryos created by IVF runs the risk of “eradicating” certain segments of the population. Others have stressed the importance of providing parents with accurate information, and a woman’s right to reproductive choices. Everyone Salient contacted for comment for this article acknowledged there is a wide range of views on these issues, and the questions faced by parents, people with disabilities, and as a society as a whole are difficult and complex.

Antenatal testing refers to the use of technologies like sonography, amniocentesis, and maternal serum screening to determine the presence or risk of particular diseases and disorders in a fetus. Sonography is a non-invasive technique in which ultrasound is used to visualise the fetus in the mother’s womb. Amniocentesis is a more invasive procedure: fetal tissue is obtained by extracting amniotic fluid from the sac surrounding the developing fetus, then DNA is extracted from the tissue and screened for genetic abnormalities, notably Down syndrome. Maternal serum screening is less invasive than amniocentesis and involves the testing of maternal blood for markers which indicate the probability a fetus has Down syndrome or a neural tube defect like spina bifida.

In August 2008 the Ministry of Health introduced funded maternal serum screening for Down syndrome risk for women in their second trimester, and will soon make funded Fetal Combined Risk Assessment screening for Down syndrome risk available to women in their first or second trimester.

A closely related issue is the screening of embryos for genetic abnormalities before implantation in IVF (“pre-implantation genetic diagnosis” or PGD), which was made available by the previous government in 2005. PGD is currently available in New Zealand where there is a known risk for a disorder, for example, single gene defects which cause disorders like cystic fibrosis or Huntington’s disease; or, with specific approval, for tissue typing in the selection of ‘saviour siblings’ (where the use of placental cells from the ‘saviour’ child is used to help a sibling with non-inherited disorder like leukaemia).

The Disabled Persons’ Assembly (DPA) New Zealand describes itself as “the national assembly of people with disabilities”. It has approximately 1200 members who either have a disability, or are the parent or guardian of someone with a disability, and 300 corporate members. Wendi Wicks, a Policy Researcher at DPA, told Salient, “DPA is concerned with an over-medicalised and catastrophised view of disability implicit in prenatal testing for ‘genetic abnormalities’”—a term she describes as “highly normative and judgmental”. Wicks says, “the implication is that if a condition can’t be treated then it’s better to not have the person who carries the condition born.”

DPA has expressed concern with the Ministry of Health’s Down syndrome screening programme. Wicks says DPA was concerned with the focus on the information available to women when screening indicates Down syndrome—“[information] about conditions and how difficult it all is… [is written] in dense medicalese,” and instead suggests the information should be “about what the actual living is like, from the experts themselves [those with the disability], and in plain language people could understand.” In 2006 DPA criticised in press releases what it saw as a focus on reducing the number of babies born with Down syndrome (due to termination when screening indicates Down syndrome), and the dearth of people with Down syndrome on the review committee.

These sentiments were echoed in the DPA’s submission to the National Ethics Committee on Assisted Human Reproduction, with regards to preimplantation genetic diagnosis. The DPA criticised the draft guidelines for PGD for what it saw as a negative view of disability, and the idea that we should “weed out [the] undesirable [genes]”.

The Green Party’s stance appears to closely aligned with the views expressed by the DPA. Green Party Disability Spokesperson Catherine Delahunty told Salient she “[does] not believe it is ethical to use antenatal testing to facilitate the termination of children with impairments”. In its policy statement on disability and reproductive rights, the Green Party acknowledges that “antenatal testing for babies with impairments is a complex and contentious issue”, but says it will “ensure that any antenatal testing programme is not biased towards termination of pregnancies when an impairment is diagnosed” and will allow “for the preparation of the birth, and life, of children with impairments.” It also stresses the importance of informing prospective parents about “the likely and/or potential experience of people with similar impairments without presuming that such an impairment is a tragedy” as well as “available or potential supports for people living with impairments and their families”.

The views of other parties in parliament are less unequivocal. Labour’s Health Spokesperson Ruth Dyson said, “the issues involved are complex and have legal, ethical and practical dilemmas associated with them” and “there is ‘no one size fits all’”. With regards to the termination of Down syndrome fetuses, Dyson stressed such choices were the decisions of the individuals involved. In the case of PGD, Dyson noted PGD was only available in particular and specific cases, and that “before going ahead with PGD, those taking part are required to be given all types of information including counselling and information about resources, community support and information about particular conditions”.

When asked for comment, Minister for Disability Issues Tariana Turia suggested Salient contact Health Minister Tony Ryall, whose office supplied Salient with Ministry of Health information. The Act Party did not respond to Salient’s questions.

The need to consider both the rights of the parents and our duty to vulnerable individuals was a common theme in the comments of people Salient spoke to. Nick Agar is an Associate Professor in Victoria’s Philosophy School whose research focuses on ethics, including the ethics of genetics. Agar told Salient, “we need to be careful to balance the interests of prospective parents who say they want to have a child free of disability and the need of vulnerable groups for respect”.

This sentiment was echoed by Joe Zuccarello, a Victoria University geneticist. With regards to Down syndrome, Zuccarello noted that people with this disorder can experience different levels of disability and said individuals with Down syndrome “do add to the variety of social life”. Zuccarello told Salient that while he thought disorders like Tay-Sachs, which leads to the painful and early death of infants, “need to be tested for and parents need to make decisions”, it is important people understand the role genes and environment play in heritability, and that a high probability of developing a particular disorder is not the same as the certainty of developing it.

Diane Ormsby, a specialist in reproductive biology at Victoria University and in fertility clinics, agrees with Zuccarello’s point about the “variety of social life”. She told Salient, “each one of us is a unique individual” and “as a species, we are strengthened by this diversity”. Ormsby also noted, however, that “wise use of scientific knowledge has also allowed us to survive”. “We need to discuss, debate and decide on the wisest use of these technologies… each of us will have our own perspective and any decision made will not be entirely comfortable for all members of society”, but she personally believes there is a place for antenatal testing in New Zealand.

With regards to the concerns voiced by DPA and others that antenatal screening could lead to an increase in the number of terminations of fetuses with Down syndrome, Ormsby notes the median age of women giving birth in New Zealand has increased to 30, up from 25 years in 1969, and the frequency of babies born with Down syndrome increases with maternal age. She told Salient “if the rate of termination of fetuses with Down’s syndrome remains the same, and the tendency to give birth later in life continues, we are likely to see a greater rate of terminations of fetuses with Down syndrome but that would not reflect any change in antenatal testing procedures”.

Ormsby said better screening procedures will ensure that information women receive is more accurate, so they are better prepared for the birth of their children—including in the cases where women decide to continue their pregnancies when carrying a child with a disorder like Down syndrome.

When asked about Preimplantation Genetic Diagnosis with IVF, Ormsby told Salient: “Very few people request PGD for a variety of reasons: financial, ethical and practical. Very few people in New Zealand will have the diseases that we are currently permitted to test for. Many couples who choose to use PGD already have a well-loved and well-cared for child with the condition they wish to test for but … feel unable to cope financially or emotionally with an additional affected child. The couple does not wish to select against the disabled person, but against the disability itself. The decision whether to seek PGD is never easy.”

The fact that these decisions are never easy ones to make seems to be a sentiment shared by everyone contacted by Salient. However, having national guidelines for the making of such decisions seems to indicate that as a society we are not comfortable with them being made in a vacuum. Nick Agar told Salient he believed that “we’re entitled to inquire into the motives of individuals and couples who want to use [preimplantation and antenatal screening technologies]”. Some of us have a greater stake in such decisions than others—Diane Ormsby said that she had the bias of being both a scientist and a mother who’d used antenatal screening; Wendi Wicks has the experience of being both a disabled person and an advocate for others with disabilities. But as with any technology, whether the impact of genetic screening on our society is a positive or a negative one lies not only in the hands of those using it, but in the hands of society as a whole.

http://www.salient.org.nz/features/difficult-decisions-disability-and-reproductive-rights-in-new-zealand

This story was syndicated by the Aotearoa Student Press Association via Salient www.salient.org.nz

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