How Do You Tell the Ugly Stories?

Most of us experience a lot of things, simply being alive. Good things, bad things, meh things. We tell each other about them, or we don't, depending on whether we find it worth telling about. But sometimes, just sometimes, something really, really ugly happens. Of the sort where you may have to deal with it for the rest of your life. You might not want to tell people, but sometimes they need to know, for whichever reason is applicable. That is not something that anybody can really do anything about, except maybe by fundamentally changing how people treat each other, but I find myself wondering – when to tell? And how?

The Patenting of Human Genome as an Issue of Women's Right to Health

In the 1990s the new science of gene technology was proving to give answers to many previously unanswered questions regarding hereditary diseases. One of these answers was the discovery of the genes BRCA1/2, mutations on which increase the likelihood for breast and ovarian cancer in women to up to 85%. There was a race among scientists to first identify the gene (originally it was thought to be just one) and sequence it, and in 1994 University of Utah filed a claim for the first patent in the name of Myriad Genetics, which has since held a practical monopoly on research into both genes and the testing for mutations on them. The patents cover not just specific mutations or methodologies of testing for these, but the entire genes, involving any use and research related to them. They were contested early on for a variety of reasons, relating both to the ethics of patenting human genome and to whether it is even reasonable to do so from a legal point of view. In 2009, the American Civil Liberties Union (ACLU) with others filed a suit against the United States Patent and Trademark Office (USPTO) and Myriad Genetics in order to have the patents declared invalid. They won the first case, which was since appealed by Myriad. The case was brought before the United States Supreme Court early in 2013. The gene patents were also contested in Europe for reasons related both to the effectiveness of the Myriad tests and to the ethics of patenting human genome. This text will focus on these ethics, specifically relating to treating parts of the human body as property, and how this in the BRCA case disproportionately affects women.