May 8, 2007

The Uselessness of Not Saying Yes

Well, the good news is that if you take part in a medical research project, they will protect your confidentiality.
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 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.
It'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".

9 comments:

Anonymous said...

The ST headline is indeed misleading... jut like hwo transport fare hikes are called "fare adjustments" in the publicity posters instead....

Anonymous said...

Mr Wang,

It is an established practice in the medical field, here or overseas, to use such medical records in research in the hope that new medical knowledge can be engendered. How else do you think clinical discoveries are made?

Overseas, it is standard practice to have 'informed consent' before carrying out such research - this is usually done by the patient signing a form agreeing at the point of admittance that his/her medical records will be used as such.

In fact, essentially, the two articles are the same. There are already measures in some hospitals here to ensure that medical records used for research are 'blinded' (personal information such as name, age & IC is removed - however, information that can be useful in the Asian context such as race is kept).

Anonymous said...

Many things are done with the interest of the "greater good".

Which btw, is subjective depending on which side of the win/lose seesaw that you are on.

Anonymous said...

They are expert at doublespeaks and window dressings!

Celestial & Baby G said...

Who knows, maybe next time they will tell you..you can pay more if you want 100% confidentiality. Now that it's all about $$$

Anonymous said...

anon 8.17, pls don't take us for idiots hor.

the crux is of course, overseas, civil rights are accorded and informed consent has to be sought.

in sillipore, however, it's roughshod. like it or not, anything can be shoved down your throat in the name of 'greater good' e.g. organ transplant, minitoot's sky-high salary, increasing transport fares etc etc.

Pandemonium said...

The issue I have here is the title of the TODAY article, which is certainly misleading. Otherwise, reading the content of both articles, I don't really see any infringement of my privacy.

And I'm certainly more than happy to let researchers use my medical records to understand the human body better.

Anonymous said...

I don't believe in absolute privacy. There was once I did a survey with a reputable institution. I thought my particulars will be kept confidential. Few months later, I received call from another commercial party. I asked them how did they get my contact numbers. They didn't specifically state that institution but they told me, it was from a survey that I did recently. Hence it was quite obvious that they got it from that institution because that was the only survey I did. It was a survey on employment which I thought would be useful to the researchers but they betrayed my trust. From then on, I never entertain any of these people anymore. No exception.

Anonymous said...

Anything can happen if the society is filled with white collar wolves in sheep skin, masquerading as professionals and leaders of society. Organs traders are legalised to rob a person of his body parts even before he is fully dead (HOTA). Corrupted leaders can write their own pay cheques under the guise of preventing corruption and being top talents. And now, thieves can steal people's personal confidential data without any fear of being taken to task by the law.
This is really a time where morality and human decency are being throw in the wind because of the greed and lust for more and more profits, more and more wealth, more and more money.

Totally Disillusioned.