Down syndrome is a chromosomal condition which typically arises after an error in cell division, resulting in an extra copy of the 21st chromosome. This genetic condition often causes physical and mental disabilities.
The report, which was released on July 1, was written by Mark Bradford, president of the Jérôme Lejeune Foundation, who looks at the explanation of prenatal testing results, calling the current system “biased, outdated, narrow, inaccurate, and clinical” and rooted in a “profession which prefers termination in the case of disability.”
In Improving Joyful Lives: Society’s Response to Difference and Disability, Bradford details multiple steps that can be taken to protect Down syndrome individuals, including enforcement of the Kennedy-Brownback Act, which he says would improve the prenatal testing system.
The Kennedy-Brownback Prenatally and Postnatally Diagnosed Conditions Awareness Act was signed by President George W. Bush in 2008, but it has not been funded due to disputes among members of Congress “over how the topic of abortion would be handled in the materials accepted for distribution.”
However, the Lozier report says enforcement of this legislation is vital for the protection of the disabled, as it would “increase the provision of scientifically sound information and support services to patients receiving a positive test diagnosis for Down syndrome or other prenatally and postnatally diagnosed conditions.”
If this is not achievable at the federal level, the report points to state-level legislation as a second best option. State lawmakers are already beginning to address prenatal discrimination with legislation such as South Dakota’s H.B. 1240, which would prohibit abortions based on disability or sex.
Bradford notes that the Americans with Disabilities Act (ADA) was passed in order to prevent discrimination against disabled individuals. However, after comparing various studies, he estimates that somewhere between 67 percent and 92 percent of Down syndrome pregnancies result in termination.
‘Wrongful birth’ lawsuits are also harmful, according to Bradford, as they are based on the underlying principle that death is preferable to living with a disability.
Progress in Down syndrome treatment could influence a fearful parent not to abort, but a lack of funding is a major impediments to such progress, he says. The National Institute of Health (NIH) spent $22 million on Down syndrome research in 2010, but plans to spend only $19 million in 2014 and 2015, even though there are more than 400,00 individuals with Down syndrome in the United States.
Bradford compares this to the NIH’s spending for research on cystic fibrosis, which will be an estimated $80 million in 2014 and 2015, although only about 30,000 Americans have this genetic disease.
Bradford quotes a 2007 Dutch study that claims:
- 97 percent of women who abort after a Down syndrome diagnosis had wanted the child prior to the diagnosis;
- 92 percent aborted due to a “belief the child would never be able to function independently”; and
- 90 percent did so due to concern that the disability was too critical;
However, the Lozier report contrasted these perceived fears with the research done by Dr. Brian Skotko, co-director of the Down Syndrome Program at Massachusetts General Hospital, who found that 99 percent of parents of individuals with Down syndrome reported that they loved their disabled child and 79 percent found that their “outlook on life” became more positive as a result.
Dr. Skotko also found that nearly 99 percent of individuals with Down syndrome are happy with their lives, and more than 96 percent of siblings love their Down syndrome brother or sister.
The Down syndrome subjects of Skotko’s study, Self-perceptions from People with Down Syndrome, “encouraged parents to love their babies with Down syndrome” and “encouraged healthcare professionals to value them, emphasizing that they share similar hopes and dreams as people without Down syndrome.”
However, there is little positive medical assistance available for parents of Down syndrome children. Instead, they receive many negative messages, ranging from a health care provider’s “insistence on termination” to “the communication of negative stereotypes of individuals with Down syndrome,”the Lozier report points out.
According to a study by the Special Olympics, 81 percent of medical students say that “they are not getting any clinical training regarding individuals with intellectual disabilities” even as old stereotypes about them are fading away.
The National Down Syndrome Society says that “individuals with Down syndrome are becoming increasingly integrated into society organizations, such as school, health care systems, work forces, and social and recreational activities.”
For example, seven-year-old Natty Goleniowska from the U.K. was chosen last month as model to advertise school uniforms for Sainsbury’s, a British supermarket chain.