Abstract
An increasing number of children are adopted in the United States from countries where both medical care and environmental conditions are extremely poor. In response to worries about the accuracy of medical histories, prospective adoptive parents increasingly request genetic testing of children prior to adoption. Though a general consensus on the ethics of pre-adoption genetic testing (PAGT) argues against permitting genetic testing on children available for adoption that is not also permitted for children in general, a view gaining traction argues for expanding the tests permitted. The reasoning behind this view is that the State has a duty to provide a child with parents who are the best “match,” and thus all information that advances this end should be obtained. While the matching argument aims to promote the best interests of children, I show how it rests on the claim that what is in the best interests of children available for adoption is for prospective adoptive parents to have their genetic preferences satisfied such that the “genetics” of the children they end up adopting accurately reflects those preferences. Instead of protecting a vulnerable population, I conclude, PAGT contributes to the risks of harm such children face as it encourages people with strong genetic preferences to adopt children whose genetic backgrounds will always be uncertain.
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Notes
I do not mean to suggest here that to be returned to an orphanage is the worst fate an adoptee can face. Key to the discussions of placing a moratorium on the adoption of Russian children by U.S. citizens have been the deaths of at least 12 Russian-born adopted children, allegedly related to abuse or neglect. As of this writing, the most recent alleged case occurred in May 2012: “A nine-year-old Russian boy adopted by US parents died in a house fire last week, reminding Russians of several incidents of poor treatment of Russian orphans adopted by Americans” (Weir 2012, quote from article’s subtitle).
“Last year Americans adopted approximately 16,000 foreign-born children. Although domestic adoptions are still actively pursued, the number of desired available infants cannot meet the demand. For every legally available Caucasian newborn, 45 couples are waiting to adopt. Rather than facing these odds, couples begin to look internationally” (Nicholson 2002, 476–477). The number of inter country adoptions in the United States for 2013—with a breakdown by country—can be found at http://adoption.State.gov/content/pdf/fy2013_annual_report.pdf. According to the American Academy of Pediatrics, there has been an increase in the number of children with special needs adopted in the United States. See the National Council for Adoption (2011) for statistics on the number of children adopted who have special needs.
The document “Obtaining Background Information on Your Prospective Adopted Child” has been revised since 2003. The 2012 version of the document presents slightly differently the reasons prospective adoptive parents should seek such information. While the 2012 version no longer highlights “complete and accurate knowledge” as necessary for prospective adoptive parents to make informed decisions, however, many adoption groups on the Internet continue to refer to the 2003 version of the document, including the site American Adoptions (n.d.) and the resource page for Adoption.com (n.d.).
“Predictive testing can identify mutations that increase a person’s risk of developing disorders with a genetic basis, such as certain types of cancer. Presymptomatic testing can determine whether a person will develop a genetic disorder, such as hemochromatosis (an iron overload disorder), before any signs or symptoms appear” (NIH 2013, ¶7 under “What are the types of genetic tests?”).
I clearly agree that it is problematic to assume that the natural match supplied by the so-called genetic lottery provides a model for how to create adopted families. However, the point articulated here by Newson and Leonard suggests the holding of a specious assumption. Why children are removed in the United States from their biological families has, in many cases, as much to do with politics, poverty, and racism as it does with actual parental fitness (Roberts 2003).
For bioethicist and disability rights advocate Adrienne Asch (2000), a strong argument against both PAGT and the use of prenatal genetic tests concerns how justifications for such practices invest in the idea that the terms “special needs” and “healthy” when describing children—or potential children—are mutually exclusive.
Laura Nicholson makes the case that adoptive parents should be guaranteed access to the health insurance—and health care—their adopted children need. Given the complexities of inter country adoption in the United States—including the need for health releases about the child from both the U.S. Immigration and Customs Enforcement and the Centers for Disease Control and Prevention—many prospective adoptive parents opt to sign a waiver of any and all future State funding for health care for the child. The waivers speed up the process of the adoption, but leave adopted children vulnerable to receiving inadequate care even after they are adopted (Nicholson 2002, 478).
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Acknowledgments
I was fortunate to present a draft of this paper at the Mentoring Project for Pre-Tenure Women Faculty in Philosophy directed by Professors Louise Antony and Ann Cudd. The development of my argument benefited greatly from comments provided by the participants in the conference, particularly those of Elizabeth Harman. I am also grateful for responses to earlier versions of this essay offered by colleagues and friends, especially Ellen Feder, Lori Gruen, and Susan Isenberg. The final version of the paper also reflects my attempt to address several thoughtful and very helpful queries raised by an anonymous reviewer.
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Leighton, K.J. Accepting Adoption’s Uncertainty: The Limited Ethics of Pre-Adoption Genetic Testing. Bioethical Inquiry 11, 245–260 (2014). https://doi.org/10.1007/s11673-014-9519-2
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DOI: https://doi.org/10.1007/s11673-014-9519-2