Written Testimony of Mary O’Callaghan, Ph.D. in Support of SB 334

February 26, 2015

Testimony of Mary O’Callaghan, Ph.D. as prepared for delivery before the Indiana Senate Health and Provider Services Committee hearing on SB 334, Feb. 18, 2015

Mary O’Callaghan

Mary O’Callaghan

Mary O’Callaghan, Ph.D.

Public Policy Fellow, Center for Ethics and Culture, University of Notre Dame

Prenatal Outreach Coordinator, Michiana Down Syndrome Support Group

Mother to Tommy, age 7, who has Down syndrome

I. Banning abortion due to poor prenatal diagnosis gives the clear and consistent message that we do not tolerate discrimination in Indiana.

 In 2007, the American Congress of Obstetricians and Gynecologists issued the statement, as part of a committee opinion, that they “opposed meeting requests for sex selection for personal and family reasons, including family balancing, because of the concern that such requests may ultimately support sexist practices”. The same reasoning applies to requests by parents for selective abortion due to disability; such requests may ultimately support discriminatory practices against those with disabilities. Brenn and Chapman (2009) note that these abortions could “diminish understanding and support for affected individuals and their families and increase the stigma associated with having a genetic disorder” (p. 2155).

II. Banning abortion due to poor prenatal diagnosis looks beyond the short-sighted solution of eliminating people with disabilities and instead allows us to find long term ways to prevent disabilities and develop real treatments.

Prenatal diagnosis had its origins in efforts to treat those with disability. For example, Jerome LeJeune, the French geneticist who discovered the chromosomal basis of Trisomy 21, or Down syndrome, was motivated by the belief that Down syndrome could ultimately be cured: “We will beat this disease. It’s inconceivable that we won’t. It will take much less intellectual effort than sending a man to the moon.”   Abortion is a short-sighted solution; it doesn’t treat the disease, it eliminates the patient. Allowing widespread abortion of those with disabilities has shifted resources and attention away from prevention and treatment and has led to heavy investment in prenatal screening. For example, the NIH allotted 18 million for research on Down syndrome in 2014.   The state of California alone, however, has budgeted $117 million this year for prenatal screening.  Finding long term and lasting solutions to disability prevention and treatment is not only a better use of resources, but it is also a humane solution which upholds the dignity of those with disabilities.

III. Banning abortion due to disability sends the clear message to mothers that their child’s disability does not have to be a death sentence.

Mary O’Callaghan at Indiana Senate Health and Provider Services Committee hearing

Mary O’Callaghan at Indiana Senate Health and Provider Services Committee hearing

Allowing abortion in the case of disabilities can put undue pressure on mothers to abort their children. This was evidenced by a recent study reporting that nearly 1 out of 4 women had a doctor who was insistent on terminating the pregnancy after a diagnosis of Down syndrome (Nelson et. al, 2013). It is likely that some doctors convey their own bias towards abortion to the mother.Cavanaugh et al (1995) found that 63 % of obstetricians and gynecologists reported a belief that abortion was justified in the case of non fetal anomalies and 90% of obstetricians and gynecologists reported a belief that abortion was justified in the case of uniformly fatal anomalies. Even in the absence of direct coercion or more subtle influence, many women make decisions based on unfounded fears and limited information. For example, woman who abort their children with Down syndrome cite fears that life will be too hard for them, their family or child (Rapp, 1999). Research shows the exact opposite: a large scale longitudinal study of over 100 families (Cunningham, 1996) reported more positive effects of having a child with Down syndrome than negative , and recent research shows that over 90% of individuals with Down syndrome (Skotko, 2011) and their parents (Skotko, 2011) are happy with their lives.  

 

References

Benn, P.A. & Chapman, A.R. (2009) Practical and Ethical Considerations of Noninvasive Prenatal Diagnosis. JAMA, 301(20); 2154-2156.

California Screening Program: Genetic Disease Screening Program (2103). Estimate for Fiscal Years 2013-14 and 2014-15. Department of Public Health.

Cavanagh, D,Martin, D.J., Foley, D.V., Bulfin, J., Bowes, W.A., DeCook, J.L.(1995). Changing attitudes of American OB/Gyns on Legal Abortion. The Female Patient, (20).

Committee on Ethics (2007). Sex selection.: ACOG Committee Opinion No. 360.

Obstet Gynecol, 109:475–8.

Cunningham C.C. (1996). Families of children with Down syndrome. Down Syndrome Research and Practice, 4(3), 87-95.

LeJeune, Jerome (2013) “21 Thoughts”, by Dr. Jérôme Lejeune. ejeuneusa.org/advocacy/21-thoughts-dr-jérôme-lejeune#.VOK2wi7d_4A

Nelson, B.S., Springer, N., Foote, L.C., Frantz, C., Peak, M., Tracy, C., Veh,T., Bentley, G.E., Cross, K.A. (2013). Receiving the initial Down syndrome diagnosis: Comparison of prenatal and postnatal parent group experiences. Intellectual and Developmental Disabilities, 51,(6) 446-457.

NIH funding: http://report.nih.gov/categorical_spending.aspx

Rapp, R. (1999). Testing Women , Testing the Fetus: the Social Impact of Amniocentesis in America. (New York: Routledge).

Skotko, B.G., Levine, S.P., Goldstein, R. (2011).  Self-perceptions from People with Down Syndrome.  American Journal of Medical Genetics, Part A: 155:2360-2369

Skotko, B.G., Levine, S.P., Goldstein, R. (2011).  Having a Son or Daughter with Down Syndrome: Perspectives from Mothers and Fathers.  American Journal of Medical Genetics Part A 155:2335-2347.

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