Citizen Scientists

WSJ ^ | 12-3-2011 | Amy D Marcus

[Dysart]

More than a decade ago, in hopes of advancing research on the rare genetic disease that afflicts her children, Sharon Terry let two different researchers draw their blood for study. But when she asked for the results of the investigations, the scientists gave her a startling response. Information generated from her own children's DNA, they said, didn't belong to her.

"It's my data," says Ms. Terry, who is now president and chief executive of Genetic Alliance, a network of organizations that do research, advocacy and education around genetics, in Washington, D.C. "But it gets locked away in some database that I can't get to."

[Dysart]

'They have one thing in common: They believe that too much science happens behind closed doors.'

[exDemMom]

That woman may have signed a consent agreement that does not, in fact, give her any access to the final results of the study in an identifiable way.

There is also the possibility that the scientists did not, in fact, find anything unique in her children’s samples, and therefore did not have anything to tell her.

Any patient who participates in a study, however, is perfectly free to look up publications of the person conducting the study. A well designed PubMed search should turn up the study in which the patient participated—knowing such details as who the investigators were, the condition being studied, and the timeframe of the study will enable the patient to find the study, if it has been published. Medical studies are not, in fact, hidden from the public, although there may be a fee for actually getting a copy of the article.

Other issues brought up in the WSJ article are too complicated and full of nuances to be really discussed here.

[muawiyah]

Regarding statistical analysis, the scientist who thinks a bigger sample size yields more precise results is an idiot.

You can use as few as 6 samples to get something MEANINGFUL (which frequently has nothing to do with precision) if you are prepared to work your way through a T-distribution and its logic.

Most scientists are not prepared to do statistical analysis using small sample sizes because, alas, THEY ARE NOT statisticians.

The problem with much medical research is you really can't hedge in your sampling universe ~ you get what you get. That approach and understanding led to medical practitioners not realizing that African-Americans do not necessarily respond to medicines the same as White-Americans, nor do all groups of White-Americans respond to the idealized "Average".

Then there are Asian-Americans, and within their group are numerous sub-groups ~ including many people with Far Northeastern Asian ancestry ~ and there are just one whale of a lot of sub-groups there ~ with many genetic isolates.

A great deal of the study of sub-groups will need to be done by private individuals with maybe just their own relatives for their sample universe. The Big Boys have little or no interest in that although custom designed cancer cures are undoubtedly going to be a going thing fairly soon. Then they might care but they'll still be giving the same blood pressure medicine whether or not it works in your case!

[SaraJohnson]

Modern “technocrat” elitism, especially that displayed by the scientific community since it has gone PC, is not going to work out well for American science in the long run.

The politicaly and socially motivated egoists and police state nannies who get their mugs in the newspapers are ruining the public’s trust and respect of science and medicine. The global warming poitical sham is just one example. Medicine under humanism is headed for big problems. It’s sad to see the Left having culturally cleansed the ethics and patient-doctor relationship in medicine.