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The American Fertility Association’s Monthly Newsletter

May 23, 2007

PRENATAL TESTING: INFORMED DECISIONS
By Andrienne Asch, Ph.D.

Now that professionals recommend that all pregnant women should undergo testing to learn whether their fetus is affected by Down syndrome or other prenatally diagnosable disabling conditions, parents raising children with the same conditions are coming forward to offer their experience and guidance to health professionals and to prospective parents. Rather than being wary of the information these parents are offering, the medical establishment and prospective parents should welcome and embrace this source of information as a valuable addition to what they can learn from doctors, midwives, genetic counselors, or the Internet.

Parents raising children who have disabilities are true experts. They can tell prospective parents much they need to know about how the rewards and struggles of raising the child with a disability resemble or differ from the experiences of other parents whose children don't have diagnosable diseases or disabling conditions. They can describe the ways that a child's disability often can become only one of her or his characteristics, along with her temperament, aptitudes, interests, appearance, and personality. Undoubtedly, these parents will recount struggles to get good information about their child's condition and challenges in obtaining quality services such as infant stimulation or education. They will also be able to describe strategies they use to help their child and family in the wider community. Knowledgeable parents of children with disabilities may appear more positive about their experiences than are health professionals describing life with disabled children, because data on their family life indicate that they are more contented than professionals expect. But these parent informants have every reason to be honest about experiences of difficulty, fear, and stigma that may be accompaniments of life in today's society for people with disabilities and their families.

The typical woman or couple discussing prenatal testing and possible pregnancy termination knows very little about the conditions for which testing is available, much less what these conditions might mean for the daily life of the child and the family. Most obstetricians, midwives, and genetics professionals have not had daily experience with children and adults with disabilities or with their families. Professionals do not learn about the social implications of life with disability for children and families; they do not typically have contact with disabled children and adults outside clinical settings; and they are not expected to know the laws, disability rights organizations, and peer support groups that can become a part of the lives of many families raising children with disabilities. Until their own education is revamped, obstetricians, midwives, nurses, and genetics professionals should encourage prospective parents considering prenatal testing to get this information from experts, the families raising children with disabilities and people with disabilities themselves.

Everyone obtaining testing should receive sufficient information about predictable difficulties, supports, and life events associated with a disabling condition to enable them to consider how a child's disability would fit into their own hopes for parenthood. At a minimum, they should get a detailed description of the biological, cognitive, or psychological impairments associated with specific disabilities, and what those impairments imply for day-to-day functioning; a discussion of the laws governing education, entitlements to family support services, access to buildings and transportation, and financial assistance to disabled children and their families; and literature by family members of disabled children and by disabled people themselves. If prenatal testing indicates a disabling condition in the fetus, parents of children with the diagnosed condition can tell prospective parents what services are available in their area; they can provide contact information with a parent group representative and with a member of a disability rights group or independent living center that works with people with disabilities and their families. In addition, these families can invite prospective parents to spend time with them so that they can see firsthand what family life looks like when a child has Down syndrome or some other health problem. Prospective parents can ask families of children with Down syndrome what it is like when a child doesn't understand all the conversation at the dinner table, or how they help their child explain his abilities and limitations to his classmates.

Although some prospective parents will reject some or all of this information and these contacts, responsible practice concerned with genuine informed decision making and true reproductive choice must include access to this information, timed so that prospective parents can assimilate general ideas about life with disability before testing, and obtain particular disability-relevant information if they discover that their fetus carries a disabling trait. Now that such testing is being offered earlier in pregnancy, there is more time between getting results and the time when a decision about continuing or ending the pregnancy must be reached. Prospective parents and their doctors or midwives could spend this time meeting one or more families raising children with disabilities, as well as families who decided to abort after a prenatal diagnosis.

For some people, any mobility, sensory, cognitive, or health impairment may indeed lead to disappointment of parental hopes; for others, it may be far easier to imagine incorporating disability into family life without believing that the rest of their lives will be blighted. Prospective parents understandably worry about the child's physical well-being, emotional pain, and social acceptance. They fear that a child with a disability may have a very difficult life with no support when they themselves are old or no longer alive to help their child.

Families already aware of the arrangements they have made and of the community resources available are in a unique position to give an accurate picture of what is in store. These discussions will include what is absent as well as what is working. Practitioners and policymakers can increase women's and couples' reproductive choice through testing and counseling, and they can welcome the help of family experts in the quest for truly informed decision-making by prospective parents. Laws such as the Individuals with Disabilities Education Act and the Americans with Disabilities Act chart a course of inclusion for disabled people of all ages.

We do not yet have the inclusive society that people might dream of, but families raising disabled children offer invaluable resources to prospective parents who are trying to raise children with disabilities in twenty-first century US society. In order to make testing and selecting for or against disability consonant with improving life for those who will inevitably be born with or acquire disabilities, our clinical and policy establishments must communicate that it is as acceptable to live with a disability as it is to live without one, and that society will support and appreciate everyone with the inevitable variety of traits. We can assure prospective parents that they and their future child will be welcomed whether or not the child has a disability. If that professional message is conveyed, more prospective parents may envision that their lives can be rewarding, whatever the characteristics of the child they are raising. When our professions can envision such communication and the reality of incorporation and appreciation of people with disabilities, prenatal technology can help people to make decisions without implying that only one decision is right. Families raising children with disabilities, as well as families who decided not to do so, are invaluable resources in enabling prenatal testing to lead to wise and thoughtful decisions about childraising.

Adrienne Asch is the Edward and Robin Milstein Professor of Bioethics at The Albert Einstein College of Medicine and Director of the Center for Ethics at Yeshiva University.

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