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Fri, March 10, 2006 : Last updated 20:29 pm (Thai local time)



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Home > National > Public 'lacks awareness on threats to privacy'





DNA RESEARCH
Public 'lacks awareness on threats to privacy'

It's time Kingdom confronted the sensitive issues surrounding genetic profiling, experts say

The public does not yet appreciate that by giving a few drops of blood they could pass on numerous secrets about themselves to anyone in the world.

As DNA-based research proliferates without sufficient controls in place, scientists have argued that privacy is increasingly under threat.

"The genetic profile is the most sensitive type of information on individuals," says Dr Prasert Palitponcanpim, manager of the National Health Foundation's (NHF) bio-ethics programme.

"But very few people know it," he adds. What happens if genetic information showing someone has a susceptibility to develop a serious mental illness such as schizophrenia slips through the researcher's fingers into the wrong hands? "Take an HIV test as an example," says Prasert.

As DNA research remains a recent area of study in Thailand there have been no cases of this sort but Prasert says there is a story of an employee in the Western world being fired after his susceptibility to a serious illness was revealed in a leaked DNA report.

Even in the right hands, such knowledge can cause problems.

"I am in a dilemma," said Dr Verayuth Praphanphoj of Rajanukul Institute's Centre for Medical Genetic Research.

The doctor is leading DNA research into whether genetic make-up has made some tsunami victims more susceptible to post-traumatic stress disorder (PTSD).

The genetic information is particularly sensitive when it comes to a link with mental illnesses such as schizophrenia, bipolar disorder, depression and alcoholism, the doctor explains.

Although research is intended to study only certain diseases from the DNA sequence of the volunteers, the knowledge of other serious diseases associated could be uncovered.

Verayuth's PTSD research is a good example of the issues surrounding DNA research. One mental condition is often associated with others.

Verayuth is faced with the quandary of whether to tell the volunteer if they have genes linked to schizophrenia. And the doctor concedes it is even harder to decide whether to let the person's family know the results, as mental disease can be inherited.

The best he can do, he says, is to ask the volunteers and their families if they wish to be told the bad news.

People's DNA rights are debatable, says Prasert.

Verayuth thinks researchers have a claim on information they acquire from studying a person's DNA, as volunteers can leave the project at any time.

A tug-of-war over ownership of DNA profiles will arise if a volunteer wants to protect their privacy by requesting their profile be returned or destroyed.

Both Prasert and Verayuth agree that these issues are merely the tip of an iceberg of problems coming with the proliferation of DNA research, complicated by the fact that most research projects depend largely on overseas laboratories.

Despite material transfer agreements adopted globally by scientists, Verayuth, whose project also sends volunteers' blood samples for further processing overseas, says: "Only God knows if anyone breaks the rules."

"There could be more to it than what we know now," says Verayuth, referring to possible abuses of DNA without the owner's consent.

Raising public awareness about the importance of DNA privacy is the most effective tool to protect people's rights, says Prasert.

"If people are not aware of what they are doing, any legal protection mechanism can easily be violated," says Wasun Chantratita, another researcher studying people's differing responses to medicines.

The ethics committees, which are responsible for approving human-trial proposals, are not sufficiently concerned with privacy issues, says Prasert, who concedes that to raise the public's awareness is no easy task as the number of DNA studies multiplies.

Arthit Khwankhom

The Nation








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