ST May 8, 2007
New privacy laws to protect data of research participants
Information such as name and age will be out-of-bounds to researchers
By Tania Tan & Michelle Neo
NEW privacy laws will soon be in place to boost biomedical research here.
As Singapore moves into research using human subjects, the legislation will ensure that the personal data of those who take part in these studies remains strictly confidential.
The move is aimed at assuring the public that biomedical research here is carried out 'with the greatest care', said Professor Lim Pin, chairman of the Bioethics Advisory Committee (BAC).
Several research projects here have had difficulty attracting participants because of the confidentiality issue.
Two years ago, for example, an ambitious medical study - one that aimed to explore the relationship between genes, environment and disease, and billed as the nation's largest - ran into problems when only half of those approached were willing to disclose their medical histories.
In 2004, poor participation hampered the first twin registry study - only 11 out of 5,000 needed pairs signed up in the first year.
Yesterday, the BAC tabled 11 recommendations in a 48-page report aimed at allaying the public's fears of a lack of privacy. The Cabinet has given the report its thumbs-up; about 70 health care, research and governmental institutions were asked for their views on it.
The arguably not-so-good news is that even if you didn't choose to take part in a medical research project, they can use your medical data anyway:
Your body could be an open bookIt's interesting to compare the titles of the two articles - "New privacy laws to protect data of research participants" versus "Your Body is an Open Book".
No consent may be needed for researchers to access anonymous medical records
Tuesday • May 8, 2007
By Tan Hui Leng
YOU are warded with a serious medical condition and, as is standard practice, your case is entered into the hospital's computer system. What you might not expect is that your medical records could end up in the hands of researchers, without your consent.
Not only would this be perfectly legal, but if a recommendation by the Bioethics Advisory Committee (BAC) gets the green light, the researchers would be permitted to publish the findings — as long as they do not identify you.
"The study of patients' medical records has engendered much valuable medical knowledge. However, obtaining consent is not always practicable," said the committee, which released its report yesterday, in a statement.
It is thus proposing that institutional review boards of research organisations be allowed to waive the need for a patient's consent, in situations where the research involves only the use of medical records — with no patient contact — and as long as confidentiality is not compromised.