PGD and PGS: A new era of babies

Today, we are learning the language in which God created life…With this profound new knowledge, humankind is on the verge of gaining immense, new power to heal.  Genome science will have a real impact on all our lives—and even more, on the lives of our children.

These are the words spoken by former President William Clinton on the completion of the first survey of the entire Human Genome Project (HGP).  The Human Genome Project was a federally funded project aimed at identifying and mapping all 20,000-25,000 genes in the human genome.  The project sought to create the foundation for science to discover genetically linked diseases.

HGP is one link in the new world of biotechnology used in medicine and public health.  As technology improves, genetic research and testing are experiencing innovative developments in every form, especially in genetic reproductive technology and testing.  Preimplantation Genetic Diagnosis (PGD) and Preimplantation Genetic Screening (PGS) are two of those latest developments.  PGD and PGS are tests that are performed on embryonic cells after in vitro fertilization has occurred.  Doctors take one to two cells from the embryo and runs tests, including chromosomal analysis, for serious diseases and disorders on the cell(s).  After the tests, doctors implant the embryos connected with unaffected cells into the prospective mother’s body.

PGD, particularly, was created and primiarly used for families with a history of serious genetic diseases and disorders.  The test was a way for these families to avoid having a child with the genetic proclivity to the respective disease/disorder running in the family.  Recently, however, PGD and PGS have come into the spotlight for genetic analysis usage.  Genetic analysis is the more controversial side of PGD and PGS.  While genetic analysis allows prospective parents to screen for serious diseases and disorders, it also allows them to screen against unwanted, non-medically related traits.

The use of PGD and PGS for non-medical trait selection has alarmed many.  There are fears that parents are creating designer babies that will have negative repercussions on the individual child and society in the future.  Opponents of non-medical selection argue that the child’s right to autonomy is being taken away.   That is, through the selection of one trait, the child is presumptively having other traits taken away.  In addition, society potentially faces a “back door eugenics” (screening out those deemed “undesirable”) and increased stigmatization for those presently carrying the screened out traits.

As someone very interested in health, human rights, and discrimination, PGD and PGS usage for non-medical selection alarms me as well.  My alarm stems primarily with the push to converge genetic reproductive testing with public health.  The eugenics movement was grounded in genetics.  Also bound in the movement was the notion that some traits were less desirable than others and therefore were considered deviations or problems that were “a matter of public health.”  As many history books will tell, the “undesirable” traits that were allegedly public health concerns, tended to be traits found in minority populations (disabled, immigrants, racial/ethnic minorities).  Dozens of people falling into those category were sterilized or prevented from marrying all in the name of public health.  While PGD and PGS for non-medical trait selection may have a long way to go before it truly embodies a eugenic state of mind,  I believe that there is a legitimate fear of a form of back door eugenics. While we arbitrarily begin to choose what are “desirable” traits, those with “undesirable” traits may be fazed out or discriminated against because they deviate from the norm of what would now be considered the public health.

Parental Pass for Child Experimentation?

On September 15, 2011 dozens of families in the Baltimore, Maryland area filed a class action lawsuit against Kennedy Krieger Institute (“KKI”) accusing KKI of knowingly exposing black children to lead poisoning in connection to a 1993 human research experiment.  Best explained in the suit, “Children were enticed into living in lead-tainted housing and subjected to a research program [through the consent of their parents] which intentionally exposed them to lead poisoning in order for the extent of the contamination of these children’s blood to be used by scientific researchers to assess the success of lead paint or lead dust abatement measures.” NY Times Article–Racial Bias Seen in Study of Lead Dust and Children

Amongst the plaintiff’s claims against KKI is failure to obtain informed consent.  The plaintiff’s argue that KKI’s actions were taken without informed consent because parents cannot consent to non-therapeutic research on minor children.

In a normal medical innovative context, parental consent on behalf of a child does not appear to be an issue.  Doctor’s are allowed to use innovative therapeutic techniques that could directly benefit their patient and parents are allowed to consent to therapeutic measures that benefit their children. There, however, appears to be an issue with the validity of parental consent in the context of human experimentation because experimentation is not beneficial to the child.

The present KKI case highlights the issue with human experimentation and child participants.  It also presents the hotly debated issue of whether a parent should be able to consent on behalf of their minor child to participate in non-therapeutic human experimentation. Although the issue was not clearly presented in a 2001 suit for the same study, a Maryland court of appeals answered in the negative. Maryland Lead Paint Case

I too agree with the plaintiff’s and the 2001 Maryland court of appeals decision.  Parents should not be able to consent on behalf of their minor child to participate in non-therapeutic human experimentation.  The theory of informed consent is grounded in the common law idea that every man has a right against unwanted bodily invasion.  With children, this right is framed differently because children are thought to lack the capacity to make decisions in their best interests.  Parents are therefore given the right to consent to medical decisions for their minor child under the premise that the parents have the best interest of their child in mind. Thus, parents are entrusted to act in the best interests of the child by consenting to things that will benefit the child.

Human experimentation, arguably, does not confer a benefit on the child.  It, instead, confers a benefit on society with new knowledge that could potentially aid the greater community.  Despite the benefits conferred upon society, allowing parents to consent experimentation on a child directly contradicts the rationale for allowing parents to consent.  In fact, it subjects unknowing subjects to risks that the subject has not consented to. Parental consent thereby, acts as a free pass around required informed consent from the participant in human experimentation.