More data key to guiding future applications of PGD, Baruch writes

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More data key to guiding future applications of PGD, Baruch writes

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Parental preferences and evolving technology have opened the door to the use of

preimplantation genetic diagnosis (PGD) for purposes many find troubling, writes

Center Law and Policy Director nah Baruch. But, she argues in a recent

issue of the Houston Journal of Health Law & Policy, federal agencies lack the

authority and mechanisms to make ethical determinations regarding acceptable

uses of PGD, as well as data on the long-term health and psychological effects

of PGD on families. Thus, their first step should be to require that data be

collected on outcomes of all PGD procedures performed in the United States.

Baruch summarizes the process of PGD, which requires egg extraction, in vitro

fertilization, cell biopsy, genetic analysis, and embryo transfer to a woman's

uterus. She explains that the procedure " originally was developed for families

affected by serious inherited genetic illnesses. " However, PGD is used now to

attempt to improve the success rate of fertility treatments, as well as to allow

parents to make choices about future children unrelated to serious childhood

illnesses. For example, some parents use PGD to " attempt to have a baby who is

an immunological match for an existing seriously ill child — the baby's cord

blood is used for stem cell transplantation. " In other cases, PGD has been used

to select embryos without genes that put them at high risk for adult-onset

diseases such as breast cancer or Alzheimer disease, or to select embryos of a

certain sex. A 2006 Center survey of in vitro fertilization clinics found that

three percent of the clinics had provided PGD to help parents with a disease or

disability, such as deafness or dwarfism, to have a child who shared that

condition.

Such uses have sparked ethical concerns, Baruch notes, including predictions of

strained family relationships in the cases of HLA matching and sex selection,

and questions about whether the possible risks of the PGD procedure are

justified in these cases. As for selecting for disability, " For many medical

providers, a parent's `choice' to initiate the use of PGD simply to have a deaf

child – rather than an effort to avoid a serious or lethal illness – would be

tantamount to inflicting harm and would unacceptably cause the future child to

suffer with a serious medical condition, " Baruch writes. " Yet many in the deaf

community argue that deafness is not a disability but a culture and a community

united by sign language. "

Such uses of PGD – or, for that matter, prenatal testing and selective

termination – are " difficult to address through direct oversight or regulation

of PGD, " Baruch writes. This is because no societal consensus exists on the

appropriate uses of PGD, and because the " very personal and private reproductive

decisions of adults and prospective families traditionally are left alone. "

Federal regulation of PGD is thus limited to some oversight of the procedure's

safety and accuracy, and does not touch on the reasons for its use.

Therefore, Baruch writes, " While there is a role for government in overseeing

the safety and effectiveness of PGD, it is voluntary professional societies –

organizations of PGD providers – that are best situated to address issues about

appropriate PGD uses. " She suggests that organizations such as the American

Society for Reproductive Medicine, the PGD International Society, and the

European Society for Human Reproduction and Embryology issue practice guidelines

on the appropriate uses of PGD. Similarly, patient groups could develop their

own recommendations regarding PGD for certain conditions, and " could educate

genetic counselors and other health care professionals by including the

perspective of those living with the genetic disease or condition. "

Federal agencies should, however, take a leading role in collecting the data

needed to assess PGD outcomes, Baruch argues. Currently, no data is collected

systematically on the health of children born following PGD, so the long-term

risks of the procedure – if any – are unknown. The Center for Disease Control

already requires in vitro fertilization clinics to report treatment outcomes,

and should also require clinics to report when PGD is used as part of an IVF

procedure, Baruch writes. " Analysis of this new data would allow providers and

prospective parents to judge whether the risks of PGD are outweighed by the

benefits in particular circumstances and aid development of government oversight

of PGD and effectiveness. " – a

Baruch, S. 2008. Preimplantation Genetic Diagnosis and Parental Preferences:

Beyond Deadly Disease. Houston Journal of Health Law & Policy 8: 245-270.