We live in an age of subversion and sabotage, though not through your typical James Bond espionage, but data acquisition and hacking. Media mules Andy Coulson and Rebekah Brooks, among other editors currently stand trial for the invasion of private data. Edward Snowden’s revelations have also bought the USA’s National Security Agency, along with the UK’s GCHQ (Government Communications Headquarters) in to question about the motives and legality of their access to civilian and national data. In the midst of criminal proceedings, national mistrust and civilian subterfuge, British scientists are searching for 100,000 UK citizens to give up their most personal data of inestimable value, their genetic code.
The UK Personal Genome Project aims to provide a spectrum of data on the human genome to improve health care and biological literacy. The non-profit organisation hopes to publish the genomes of citizens for open- access allowing the data to be interpreted and dissected transparently by researchers and collaborators. Obtaining and publishing such a vast amount of data, with each human genome consisting of approximately 3.0×109 base pairs, will hopefully lead to a better genetic understand of diseases. We currently treat most illnesses from a nurturing prospective, how lifestyle predispose certain aliments, altering life choices to help prevent them. Recent and primary genetic investigations have provided a wealth of epidemiological information. The ability to access life’s manuscript provides a holistic approach to health care, the interaction of the genome and the environment.
However, to provide a holistic approach you require an intercalation of the two dichotomies. A donated genome cannot remain anonymous but must be supplemented with medical, social, environmental and nutritional, exposures, histories and measurements. Though a name, address and photograph would not be attached to the dataset, it has been indicated that you may be able to work back through the information to the identity of the donor. Other ethical issues also arise with the fact genomes are shared with kin. The law on human genetics currently states that people have the right to all the knowledge available about themselves, based on autonomy and the right to self-determination. The right to ignorance of a third party (a parent, sibling, partner or offspring) comes second. Should a donated genome reveal a disposition to a degenerative disease or cancer to an individual, it reciprocally reveals a potential disposition to their close relatives, who may wish to remain ignorant. It is currently impossible to share and protect genomic data.
The UK Personal Genome Project promotes society to the cusp of human genetic comprehension and holistic medical utilisation, whilst conversely placing the individual at social and criminal harm. Such free access of personal information available to not only the British public but potentially the globe over requires stringent examination and revision; it is currently being assessed by British ethical boards. Some groups opposed to the motion have been provocative and potentially hyperbolic of the criminal threats the database presents, however it is imperative we don’t concede to a criminal minority and retard scientific advancement.