May 30, 2011

Canadian Court Establishes Legal Rights for Donor Offspring

A noteworthy development in Canada regarding the rights of offspring conceived using gametes (eggs or sperm) from anonymous donors. The Supreme Court of British Columbia has accepted a human rights/equal protection argument regarding the administration of the province's adoption law which did not offer the same legal protections to donor offspring as were provided to adopted offspring. A growing movement either against such anonymous donations or against the attendant secrecy has emerged in recent years, with opposition focusing on the inability of the offspring to learn about their familial (and genetic) heritage, as well as concerns regarding the occurrence of widespread sibling clusters. The situation in which such donor offspring find themselves increasingly differs from those who were adopted in the traditional sense. The trend toward open adoption has encompassed traditional adoptees, but the trend toward openness has not extended to those born from anonymous egg or sperm donors. Of course, the lack of lineage information has relevance in, for example, understanding that the prevalence of a clinical condition is higher is a particular ethnic group; individuals knowing thier own history can be motivated to undertake genetic testing to define their particular level of risk (e.g., Tay-Sachs disease risk among Ashkenazi Jews is widely known, less well-known is the increased risk for those of Irish and French-Canadian descent). In Pratten v. British Columbia, the court accepted the argument that the province's adoption law discriminated against those conceived with the use of anonymous donors because they did not have the same rights to learn the identity of their parent(s), and also because the records pertaining to their biological origins were not required to be preserved, as was the case for traditional adopted offspring; the law violated  Section 15 of the Canadian Charter of Rights and Freedoms. This is the first court in North America to rule in favor of donor offspring rights; the case offers a strategy for similar challenges to adoption statutes using the anti-discrimination rationale.

May 25, 2011

World Health Organization Delays Destruction of Smallpox

At the annual World Health Assembly meeting, the World Health Organization (WHO) has once again delayed the planned destruction of the remaining smallpox stocks, currently held solely by the U.S. and Russia. A study commissioned by the WHO reported in March that the viral stocks are currently secured at the Centers for Disease Control and Prevention (CDC) (Atlanta) and the State Research Centre for Virology and Biotechnology (Koltsovo, Russian Federation).  In addition, a reserve of smallpox vaccine is held in Switzerland. Smallpox is considered to be one of the most effective bioweapons that can be procured; more details here; the relevant factors are its contagiousness, the relatively low dose needed to infect, and a high mortality rate.  This decision by WHO will be revisited in 3 years, intead of the usual 5-year review period.  Arguments pro and con regarding maintaining smallpox stocks have raged for years; ironically, both sides invoke public health concerns - those wishing to destroy the stocks argue that it removes a known deadly pathogen from a terrorist portfolio; those who argue for its preservation believe that there may be smallpox stocks that remain undetected and that scientists will need virus stocks for research should an unforeseen outbreak occur. I think it is more likely that undetected stockpiles remain outside the protection of the WHO regulatory regime, and that public health officials could find that the official stocks are invaluable in an emergency.  Moreover, there is always more research that can be done on the virus to unravel its pathogenicity and provide a more detailed road map for antiviral strategies.

May 22, 2011

Longevity? Telomere DNA Testing Raises Criticism

The telomere theory of cell lifespan and mortality has been widely considered significant - measure the lengths of the ends of the chromosomes (telomeres) and correlate that length to cell age - it was the basis for the 2009 Nobel Prize awarded to Dr. Elizabeth Blackburn, Dr. Carol Greider and Dr. Jack Szostak for this work. One could predict that commercial genetic testing to exploit this mechanism for predictive value - biological age? - would ensue.  Several companies are in the race to offer such testing: Telome Health was co-founded by Blackburn to develop such testing.  Life Length (Spain) has just announced such a test for sale for about $700. The causal relationship between telomere length and cell lifespan is still being researched; what's interesting is that the commercial interest in offering genetic tests that capitalize on the initial observations has been immediate. The Food and Drug Administration (FDA) does not generally regulate genetic tests in the marketplace unless the test is offered as a kit, rather than a laboratory service.  That means that most genetic tests are not regulated or reviewed. However, things are changing. The FDA has formed an advisory committee, the Molecular and Clinical Genetics Panel of the FDA's Medical Devices Advisory Committee, which is to study how the FDA should step in, particularly regarding the direct-to-consumer (DTC) tests being offered. The FDA has outlined a set of questions that are to be considered by the expert panel, focusing on the risk assessment, evidentiary burdens, and how the lack of professional intermediation creates more dangers for patients using DTC tests for medical decisions. One question also notes that individuals often seek such tests for lifestyle reasons or personal interest (e.g., longevity?) and asks whether those more casual objective should alter the measures of scientific performance for these tests. Of note is the criticism of such commercial testing from Dr. Greider,  the opposition by the American Medical Association to the offering of DTC genetic tests without the supervision of a health professional.