The moral maze

During the Second World War, the Germans ‘experimented’ on a number of prisoners. Despite their vile nature, the results of these experiments increased the knowledge of the medical world to some degree.

Today, minority groups are being subjected to medical research without their consent and the information obtained is being made available and used by researchers worldwide. In the 1940’s the research involved disease, surgery and the various ways the body could be made to resist pain, poisons and torture. Today, we are dealing with the microbiome – the chromosomes, cells and brain functions.

In May 1999, a disturbing crime shocked the inhabitants of Kollum, a small village in the Netherlands. A local 16-year-old girl was found raped and murdered in a field nearby, and some people said that Iraqi or Afghan residents at an asylum seekers’ centre in the village could be to blame.

Tensions rose: a fight broke out at a planning meeting about the centre. With the case unsolved, the public prosecutor turned to a newly launched research database containing Y-chromosome profiles from men across the world.

When forensic scientists compared DNA from semen collected at the crime scene with profiles stored in this Y-chromosome Haplotype Reference Database (YHRD) and elsewhere, they found that the murderer was very probably of northwestern European descent, showing that the villagers’ assumptions were unfounded. The discovery helped to calm social tensions — although the case was not solved for many years until, with the aid of more DNA work, a local farmer was found guilty.

The YHRD, which was first released online in 2000, is now widely used across the world to help solve sex crimes and settle paternity cases. Holding more than 300,000 anonymous Y-chromosome profiles, it shows how particular genetic markers are fingerprints of male lineages in more than 1,300 distinct global populations.

It can point to the likely geographic origin of mystery males, as in the Kollum case, but is now more often relied on to calculate the weight of evidence against a male suspect whose Y-chromosome DNA profile matches traces found at a crime scene. Although the YHRD is a research database, scientists both from academia and crime laboratories have uploaded data to it, and it has become a key tool for prosecutors and defence lawyers.

“The YHRD is absolutely essential for suspects anywhere in the world to get a fair chance in court,” says Walther Parson, a forensic geneticist at Innsbruck Medical University in Austria, and the vice-president of the International Society for Forensic Genetics (ISFG).

But some European geneticists say that the YHRD has an ethics problem. Thousands of the profiles it holds were obtained from men who are unlikely to have given free, informed consent, they say. These include data from minority ethnic populations such as the Uyghurs in China and the Roma in eastern Europe (see ‘Populations in a forensic database’).

The question here is one of morals and ethics. The data has been produced. Is it ethical to use it? If not, the work and effort going into it is wasted. If it is, then we are guilty of a moral offence – that of condoning an obviously criminal act.

How far should authorities be allowed to go to obtain the information they feel they require to achieve their goal?

We are used to lies, innuendos, ‘misspeaks’ and spin doctors (as if you need a degree to misinform) but when it comes to data already available, we are deluded if we think it’s inappropriate to use it. However, this, in itself incentivises those of low or no ethical standards to continue their activities. Should we draw the line; and if so where? And how? The legal area here appears to be rather vague.