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Genetics and Public Policy Center • 1717 Massachusetts Ave., NW, Suite 530 • Washington DC 20036 • 202.663.5571 • Fax: 202.663.5992 • www.DNApolicy.org
e Genetics and Public Policy Center is part of the Phoebe R. Berman Bioethics Institute at the Johns Hopkins University and is funded through
a grant from e Pew Charitable Trusts
Copyright 2004
Reproductive Genetic Testing:
Issues andOptionsfor Policymakers
[...]... number of issues related to communication of information affect carrier testing For example, carrier testing often is presented ReproductiveGeneticTesting:IssuesandOptionsforPolicymakers 17 18 ReproductiveGeneticTesting:IssuesandOptionsforPolicymakers Prenatal Testing What it is and how it works Prenatal testing includes prenatal screening to identify fetuses at higher risk for genetic. .. bring costs down such that universal testing, even for rare mutations, can be offered ReproductiveGeneticTesting:IssuesandOptionsforPolicymakers 29 30 ReproductiveGeneticTesting:IssuesandOptionsforPolicymakers The Current Legal and Regulatory Landscape Government Oversight of ReproductiveGenetic Tests Federal The federal government does not typically directly regulate the practice of... from the embryo and tested for the presence of a particular genetic trait or condition Embryos Data source: GeneTests database (2003) www.genetests.org 8 ReproductiveGeneticTesting:IssuesandOptionsforPolicymakers with the desired characteristics are then transferred to a woman’s uterus Genetic Testing andIssuesfor Society Reproductivegenetic testing offers prospective parents information about... religious tradition or individual clergy for guidance in decisions about the use of reproductivegenetic technologies However, ReproductiveGeneticTesting: Issues and Options forPolicymakers many religions are just beginning to grapple with these issuesFor some religions, acceptability depends on the specific technology and how the information it provides will be used For example, some religions find that... with a particular genetic disorder sometimes view it as far less disabling than unaffected people 22 ReproductiveGeneticTesting: Issues and Options forPolicymakers Preimplantation Genetic Diagnosis What it is and how it works Preimplantation genetic diagnosis (PGD) is a process in which embryos developed outside the womb are tested for particular genetic characteristics, usually genetic abnormalities... Genetic Diagnosis Any genetic test that can be used to test an adult may also be used to test an embryo There are no limits ReproductiveGeneticTesting: Issues and Options forPolicymakers to the types of genetic tests that may be performed on an embryo Thus, in the future PGD may be used to test an embryo for any genetic disease-causing mutation or trait that may be identified And as more couples use... This permits direct analysis of the embryo’s genes In this example, “A” and “T” are detected in the cell ReproductiveGeneticTesting: Issues and Options forPolicymakers 23 Compared to carrier testing and prenatal screening and testing, PGD is much newer and much less common Nevertheless, PGD is becoming much more widely known and used, with some predicting that every couple using IVF will someday... attributes and cause tension between siblings who are the result of PGD and those who are not 26 ReproductiveGeneticTesting: Issues and Options forPolicymakers The Future of ReproductiveGenetic Testing The technology forgenetic testing is changing rapidly in all areas, including reproductivegenetic testing As was noted previously, new technologies such as gene chips, or “microarrays”, could soon... standing of both the human fetus and the embryo Reproductivegenetic testing invariably taps into other, sometimes conflicting values and beliefs And those beliefs influence perspectives about various forms of reproductivegenetic tests But with a wide range of ethical complexities and choices, the issues raised by reproductive technologies are sometimes colored in shades of gray rather than black and. .. availability of reproductivegenetic testing might lead to a decrease in resources and support for those living with disabilities, less money for treatments and cures forgenetic diseases and a more negative societal attitude towards people with disabilities generally On the other hand, some have argued that the more widespread genetic testing becomes, and the more each individual knows about his or her genetic . 2004
Reproductive Genetic Testing:
Issues and Options for Policymakers