Damned by your DNA – an ethical travesty

 

 

Caster Semanaya has had notoriety thrust upon her in such pejorative way that her exquisite victory in the women’s 800m world championships is paling into insignificance.

The public outraged and titillated by the ‘Caster relevations’ and Sport and Recreation Minister, Makhenkesi Stofile, is apoplectic and threatening World War Three. As the media dissect, speculate and feast on this perfect ‘front page story,’ and Athletics South Africa(ASA) boss, Leonard Chuene is exposed as a liar, hearts go out to Caster who has been receiving as much unwelcome attention as a circus freak.

Caster, just 18, has been let down by ASA, athletics, doctors and scientists and described by 3rd degree as being ‘sacrificed at the glittering altar of gold.’ It must be a crushingly bitter disappointment. IOC president Jacques Rogge has warned of severe emotional trauma – citing the suicide of a star female track athlete after testing male.

Apart from the humiliation, the insensitive and undignified debate about her most intimate biology, Caster’s Raison d’être – Athletics – is being threatened.

At the centre of it all is a ‘flagrant violation of basic principles in clinical medical practice.’ It is unethical to sneak a look at someone’s medical records, much less trumpet them to the public via the media. The revelation of Caster’s DNA was done with an unprecedented crassness. And it violated our Constitution and The Declaration of the Rights of Patients set out in the World Medical Association’s guidelines including the right to information, confidentiality and dignity.

Professor James Wilmot Associated Professor of Genetics of UCT is adamant that, turning someone’s biology into public property goes against all patients’ rights.’ He says this is, “an opportunity for South Africa to ensure robust protection in terms of privacy of genetic information.” The excuse that issues around genetic privacy are all rather new is perhaps the reason why it was rather carelessly left out of the recently gazetted Protection of Personal Information Bill (14 August 2009)?

A situation which prompted Professor Wilmot to write to Minister Jeff Radebe and suggest that it would be a ‘propitious moment to add the relevant clauses and bring our legislative efforts up to date with modern times.’ Protocol around genetic privacy is not enough. There was no response.

The interest in digging the dirt’ on people’s DNA is relatively new. Ever since James Watson and Francis Crick identified based on the initial discovery by Miescher,DNA (DeoxyriboNucleic Acid and RNA (RiboNucleic Acid) for which they were awarded the 1954 Nobel Prize, scientists have been fascinated by the most extraordinary molecules on earth. Now, the public has caught on. Ever since the Human Genome Project – a kind of SWOT analysis of genes, people are scrambling to find out what exactly is locked in their DNA and the DNA of others. The ten years of collaboration between the world’s top geneticists to sequence the entire genome produced what Prof Wilmot describes as “assemblies of chemical letters that send signals to proteins to make the biological apparatuses of all living things.”

Even though this genetic fingerprinting has huge advantages for medical science there are challenges as so soundly demonstrated by the Semanaya saga. Issues of balancing confidentiality and autonomy against privacy, integrity, and self-determination reveal that the solutions are not clear-cut. There is also a real possibility of being discriminated against for your genetic makeup by unscrupulous insurance companies, medical aids, employers and now athletic bodies too. And not without reason. The human genome (the 23 pairs of chromosomes with their 25 000 genes) carries ALL the genetic information required from conception to adulthood.

What is potentially threatening is that millions of fragments of DNA can be stored on a silicon microchip loaded with unimaginable amounts of highly sensitive personal information. And the computer and internet can take this personal information into the public domain

Privacy concerns globally around the collection, storage and sharing of genetic information are being debated daily. It was enough of a concern for President Bush to introduce the Genetic Information Nondiscrimation Act – (Gina) law in May 2008. Gina protects Americans against discrimination in employment and health insurance. The UK too has laws in place to protect DNA information. Those rallying for these laws point to historical abuses like involuntary sterilization of people with mental retardation around the turn of the century and Nazi abuse and misrepresentation in pursuit of eugenic goals. The fear that knowledge of one’s genetic make-up and predisposition will stigmatise the person, just as in Semanaya’s case, were the rationale behind these proposed laws. With this in mind, Stofile said the department was ‘consulting with its lawyers regarding the human rights violations against Semenya.’

Professor James says that if the protocol governing privacy between patient and doctor is not adhered to, ‘doctors will be charged with professional misconduct – a serious allegation which can result in their being struck off the roll.’ There are also international guidelines on the collection of genetic material and in fact any material. For example, the doctor taking the sample must mark it and ‘decouple’ or ‘delink’ the patient’s name from the sample using a code. No-one in the testing lab can connect the sample with a name. Only when the results are returned to the doctor are they linked or coupled again. There is also strict protocol around respect for persons and families, unbiased presentation of information and informed consent.

Professor Raj Ramesar Head of Human Genetics at UCT says, “The chain of confidentiality and custody with regards to handling the material,” has definitely been severely compromised.” But he says the issue of taking responsibility is a nightmare. “Guilt and conviction,” he says, “are two separated issues.

18-year-old Semenya, is a gifted athlete damned by her DNA. “Let’s hope that public understanding and the establishment of law in South Africa around genetic privacy are the winners in this circus,” says Prof Wilmot. Perhaps starting with the inclusion of genetic privacy in the Bill for the Protection of personal information currently being gazetted in parliament?” Public announcement of such intimate details is crime enough for stringent genetic policing.

 


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