Today we’re hosting Mendel’s Garden, a blog carnival devoted to genetics.
For those of you visiting Ouroboros for the first time: This site is devoted to reviewing recent research in the biology of aging. You’re invited to stay a while, poke around, and if you like what you’re seeing, subscribe to our feed.
Our three entries all happen to focus around questions of science policy. As we walk through the carnival, I’ll comment on the relevance of each entry to biogerontology, in keeping with the site’s permanent theme.
• Marie Godfrey at the Genetizen Blog shares an article by Gregory Fowler, Linking the Public Voice with the Genetic Policy Process: A Case Study. In her submission email, Marie framed the article in the context of aging research, as follows:
Will public policies towards the genetics of aging reflect public values or commercial interests? Geneforum has used public forums and other tools to gather public values and present them to legislators so that legislation better reflects what people really value. This article describes how the process worked in Oregon.
The initial question raises a series of its own related queries: What are “public values” with respect to the genetics of aging? Is there a consensus, or even a plurality view? Are these views scientifically informed? What can researchers in the field do to improve the quality of information reaching the public, to shape the discourse, and encourage the best use of public and private resources?
• Aleksandr Kavokin at rdoctor.com discusses another facet of science policy: the structure of clinical trials and the influence of current regulatory law on the cost of developing pharmaceuticals. In other words: How do they use you as guinea pig? Kavorkin fills us in:
So, let’s discuss the clinical trial itself. Since the US drug market is the largest one, big companies put most of their efforts over there. Several months of blockbuster drug sales cover all the enormous expenses from the several or even several tens of projects involving failed drugs. Yet, the United States have one of the toughest process of the drug approvals. No wonder that a development of a blockbuster drug costs almost a billion dollars these days.
Especially with respect to hypothetical anti-aging medicine in the near future, regulatory questions are of the utmost concern. How would a Phase I population be defined? Are the regulatory bodies in the US and other countries prepared to acknowledge aging as a pathological state, or will efforts be limited to treating the symptoms of diseases correlated with advancing age? If the treatments proposed involve chronic (lifelong) medication, what level of side effects (if any) should be tolerated?
And finally: once the technology exists, how should it be distributed?
• Hsien Hsien Lei at Genetics and Health discusses the ethics and economics of rationing genetic enhancement technology, taking a firm position in the title of the post, Genetic Enhancement Not A Human Right:
I disagree that we should guarantee equal access to genetic enhancement. There have always been disparities between and within countries when it comes in healthcare, education, and overall quality of life. … Certainly, everyone deserves to have a basic level of health and safety, whether or not it is achievable, but where do we draw the line between a human right and a privilege?
Where indeed? How do we (as citizens; as policy-makers) define that “basic level of health and safety” to which all are entitled? Once decided, how is that entitlement to be implemented?
I thank all three authors for their submission, and all readers for visiting the carnival.