On Prenatal Screening and Testing Rev Kevin McGovern Dip Ap Sc (Opt), STL Caroline Chisholm Centre for Health Ethics, East Melbourne VIC 24 January 2011

Disputed Questions I. Is the only reason – or even the primary reason – for nuchal translucency testing to begin to search for infants with a chromosomal abnormality such as Down Syndrome so that parents have the opportunity to terminate these pregnancies? If so, the Church should instruct pregnant Catholics, Catholic obstetricians and Catholic hospitals not to do nuchal translucency testing.

Disputed Questions (cont’d) II. Does the small but real risk of miscarriage after Chorionic Villus Sampling (CVS) and amniocentesis mean that these tests are unethical? If so, the Church should instruct pregnant Catholics, Catholic obstetricians and Catholic hospitals not to do either of these tests.

Four Insights for Understanding This Debate 1. Abortion is at the heart of this debate 2. One side of the debate based on personal conviction: I would not have an abortion I would not have CVS or amniocentesis I would not have nuchal translucency testing The Church should instruct other people to do the same

Four Insights for Understanding This Debate (cont’d) 3. The other side of the debate Catholic ethicists, obstetricians, Catholic hospitals, Down Syndrome Associations Richard McCormick (1987) Chisholm Centre (1999) 4. The debate does not really engage with issues of disability or people with disability

1. Prenatal Screening and Testing 2. Official Church Teaching 3. Down Syndrome Associations 4. Unintended Consequences

1. Prenatal Screening and Testing imperfect windows through which we see the unborn child for effective management of the pregnancy nuchal translucency testing is one such window CVS (2-3% risk of miscarriage) and Amniocentesis (0.5-1% risk of miscarriage) allow more effective management of pregnancy for parents, either reassurance or time to prepare in some cases, morally justified

2. Official Church Teaching CDF’s 1987 Donum Vitae, I.2 John Paul II’s 1995 Evangelium Vitae, #14 & 63 Pontifical Council for Health Pastoral Care’s 1995 Charter for Health Care Workers, #59-61

2. Official Church Teaching (cont’d) i. Morally wrong if done with the intention of aborting a child with disabilities ii. Must not involve “disproportionate risks” iii. Morally acceptable to manage the pregnancy iv. Morally acceptable even to reassure parents or give them time to prepare

2. Official Church Teaching (cont’d) John Paul II’s Evangelium Vitae, #63: “When they do not involve disproportionate risks for the child and the mother, and are meant to make possible early therapy or even to favour a serene and informed acceptance of the child not yet born, these techniques are morally licit.”

2. Official Church Teaching (cont’d) 1995 Charter for Health Care Workers, #61: “The objectives of prenatal diagnoses warranting their request and practice should always be of benefit to the child and the mother; their purpose is to make possible therapeutic interventions, to bring assurance and peace to pregnant women who are anxious lest the fetus be deformed and are tempted to have an abortion, to prepare, if the prognosis is an unhappy one, for the welcome of a handicapped child.”

2. Official Church Teaching (cont’d) 1995 Charter for Health Care Workers, Footnote 134: “With regard to the diagnostic techniques mostly used, which are echography and amniocentesis, it can be said that the former appears to be risk-free whereas the latter contains elements of risk considered acceptable and therefore proportionate. The same cannot be said for other techniques, such as placentocentesis, fetoscopy, and the collecting of villi samples which have more or less high levels of risk.”

2. Official Church Teaching (cont’d) Science and Human Values Committee, United States Conference of Catholic Bishops, “Critical Decisions: Genetic Testing and its Implications,” Origins 25, no. 45 (2 May 1996):

3. Down Syndrome Associations Down Syndrome Association of Queensland Down Syndrome Association of NSW ACT Down Syndrome Association Down Syndrome Association of Victoria Down Syndrome Association of Tasmania Down Syndrome Society of South Australia Foundation 21 (SA) Down Syndrome Association of Western Australia Down Syndrome Association of Northern Territory

3. Down Syndrome Associations (cont’d) most if not all neutral about prenatal testing i.e. neither support nor oppose Down Syndrome Association of Queensland’s Position Statement on Prenatal Testing: “We recognise a valid role for prenatal genetic testing…” “Down Syndrome is not, in itself, a reason for termination…” “Comprehensive and balanced information about Down syndrome and about the implications of testing must be available before and during the screening and diagnosis process. The information should include current data about opportunities for children and families including: community based services, early intervention programs and opportunities for inclusive lifestyles.”

3. Down Syndrome Associations (cont’d) UK Down’s Syndrome Association’s Continuing Pregnancy with a Diagnosis of Down’s Syndrome: “In our experience, parents who find out about their child’s condition before s/he is born are better informed and often over the shock of the diagnosis by the time of the birth. This makes them better equipped to be able to bond with their baby as they would any other child.” (p. 2)

3. Down Syndrome Associations (cont’d) Canadian Down Syndrome Society’s Prenatal Genetic Screening and Testing: “We advocate that the primary goal of prenatal genetic testing should not be to reduce the birth prevalence of Down Syndrome in the population but rather to provide opportunities to improve prenatal and delivery care for the mother and baby…”

4. Unintended Consequences Does a Catholic ban on prenatal screening and testing simply make things difficult if not impossible for Catholic obstetricians and Catholic hospitals?

4. Unintended Consequences (cont’d) William E May’s Catholic Bioethics and the Gift of Human Life: “‘[M]ost medical centers with a moral concern about the sacredness of all life have traditionally not offered prenatal diagnostic services. Patients are commonly sent to centers where a pro-life stance is not expected…. Thus Catholic hospitals and those who practice obstetrics have too frequently abandoned those people most in need of support. Prenatal diagnosis offers information to a woman, a couple; such information is good because it delineates reality.’ A true challenge is here presented to the Catholic health care community.” (p. 244)