To who does genetic information belong, the individual or the family? Is this information private or collective? Can genes and their functions even participate in any ownership debates?
Surprisingly, The U.S. Patent and Trademark Office has granted thousands of patents on human genes – in fact, about 20 percent of our genes are patented. A gene [...]
There is something strange in the discussion around genetic responsibility and eugenics. On the one hand natural breeding with no consideration of genetic information is criticised as irresponsible and blameworthy conduct. With prenatal screening and embryo selection parents cannot be blamed for suffering because they have done the best they could to prevent it.
However the [...]
So how does a mutation carrier gets to have a biological child AND avoid being blamed for endowing them with a potentially harmful genetic inheritance? This is where science comes into play and the genetic screening is performed on a selection of embryos instead of after birth.
This screening technique - called pre-implantation genetic diagnosis (PGD) [...]
Questions regarding the perception of personal responsibility arise from the difference in attitude between tested carriers and non-carriers of genetic mutation. The paper “Guilt, blame and responsibility: men’s understanding of their role in the transmission of BRCA1/2 mutations within their family” (Hallowell et al 2006) brings together the accounts of men who were tested positive [...]
Also tagged carrier, perceptionLooking back at the Price family tree, the women in the family treated the genetic information in different ways.
After Deborah has been tested positive for the BRCA gene she decided to undergo a prophylactic mastectomy. This procedure, performed as a preventive medical treatment, changes her appearance (unlike the removal of ovaries). Could this visible modification [...]
From the perspective of Darwinian evolution, reproduction has a single purpose: to mix our genes with another person’s to help ours survive and propagate - to help our own genes thrive in the next generation. But where does the desire to procreate come from when the genetic material in question is known to be dangerous, [...]
Also tagged evolution, geneWith knowledge of genetic information, what is the family narrative based upon? Does the family’s sense of identity become entwined with an experience of illness?
An ancestry chart traditionally accounts the family history of marriages, births and deaths. The Price family tree follows the story of the BRCA gene’s path throughout the generations.
A family identity constructed [...]
Knowledge changes our perception of biology, replacing natural chaos with mathematical order. Statistics, quantification, calculations, numbers, charts and graphs, externalise and give form to our bodily functions and components. With a data sheet, there is suddenly simplified information to consider, and a mathematical equasion eludes that there are right and wrong answers.
Also tagged gene, information, visualisation