Can we keep our genomes quiet? Some suggestions from the US

DNA database impact on human rights

I have posted previously on the logistical difficulties in legislating against genetic discrimination.

The prospect that genetic information not only affects insurance and employment opportunities is alarming enough. But it has many other implications: it could be used to deny financial backing or loan approval, educational opportunities, sports eligibility, military accession, or adoption eligibility.  At the moment,  the number of documented cases of discrimination on the basis of genetic test results is small. This is probably due to the relatively few conditions for which there are currently definitive genetic tests, coupled with the expense and difficulty of conducting these tests. But genetic discrimination is a time bomb waiting to be triggered and the implications of whole genome sequencing (WGS) are considered in a very interesting and readable report by the US Presidential Commission for the Study of Bioethical Issues  Privacy and Progress in Whole Genome Sequencing. 

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Dignity, Death and Deprivation of Liberty: Human Rights in the Court of Protection

Wednesday’s debate on current key topics in the Court of Protection was a hard-hitting discussion on matters which elicit strong views, such as voluntary euthanasia, assisted suicide, the role of “dignity” and “sanctity of life”, and whether the latter two principles can ever be reconciled.

The fact that these are not essentially legal issues was underscored by the inclusion of ethics philosopher on the interventionist panel, Professor Anthony Grayling, who fielded the questions put to him alongside Philip Havers QC and Leigh Day solicitor Richard Stein. A video of the event will shortly be available on the 1 Crown Office Row website so I shall try to refrain from any spoilers, but here is a brief trailer to whet the appetite for a full recapitulation.

The evening started with a consideration of the Nicklinson and Martin cases, on voluntary euthanasia and assisted suicide respectively. There were a number of questions put to the panel which essentially rolled up into this:

Should voluntary euthanasia be a possible defence to murder, or can we justify action with a primary purpose of killing a person on the grounds of preventing that person’s harm or suffering?

The panel was broadly in agreement that it should. Richard Stein observed that the argument that there can never be adequate safeguards to protect the vulnerable  is being used as a “smokescreen”, and, equally, the notion that disabled people cannot exercise their free will to die because it reduces the value of disabled lives is a “hugely patronising” one. Continue reading