13 August 2012
Cheap prenatal whole-genome sequencing opens ethical can-of-worms
Bioethicists are worried that inexpensive whole genome testing will likely be used by many expectant parents to reveal a wide spectrum of genetic traits, including disease susceptibility. The problem, say medicos from the National Institutes of Health's Department of Bioethics, is that we don't yet understand what most of the genome sequence means.
Prenatal whole genome sequencing differs from current prenatal genetic testing practice in ethically relevant ways. Most notably, whole genome sequencing would radically increase the volume and scope of available prenatal genetic data compared to current tests which only identify serious genetic conditions in fetuses at high risk of them.
Some of the ethical challenges posed by prenatal whole genome sequencing arise from the uncertainty of what the information means. The function of more than 90 percent of genes in the human genome is unknown and as a result, the report says, "much of the data generated from whole genome sequencing over the next few years (or even decades) will be of questionable utility."
After analyzing the kind of information that whole genome prenatal testing will yield, the authors of the new report conclude that most of it would probably not be as helpful as information uncovered by the current categories of prenatal tests. They cited specific areas of concern:
- The quality and quantity of information may augment parents' anxiety. "To the extent that parents now think of their child as a 'clean slate' during pregnancy, the prenatal image of a normal, healthy baby will be dramatically altered by this technology," the authors write. The anxiety over the results and changing views of what is "normal" could lead to an increase in pregnancy terminations.
- Apart from reproductive decisions, the authors also foresee whole genome prenatal testing having a negative impact on child rearing. For example, if parents were able to get genetic information suggesting that their child's predicted IQ may be low, they might not strongly encourage and support the child's efforts in school.
- Finally, the new technology could increase the tension between the interests of parents and children. Although parents have a strong interest in getting information that informs their reproductive choices, children have a competing interest in not knowing certain kinds of information about themselves - information that could limit their autonomy as they grow into adulthood.
Given the potential harms from prenatal whole genome sequencing, the authors make four preliminary recommendations.
- Since only some of the information will be relevant to most parents' reproductive decision-making, the medical community should make clear recommendations about which categories of information should be routinely offered to parents.
- A child's right "not to know" his or her genetic information should not be breached unless the information is clearly useful for the parents or can improve health outcomes in the child. "We recommend that the relevant societies revise their prenatal testing guidelines to ensure that their recommendations are sufficient and appropriate for the next generation of sequencing technologies."
- More data are needed to guide the deliberation of professional societies and the public.
- Professional societies should play an active role in educating clinicians on how whole genome sequencing differs from traditional prenatal genetic tests, and on how to educate parents about the tradeoffs involved in choosing to engage in it.
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Source: The Hastings Center