[citation][nom]dalethepcman[/nom]yeah, lets build a dna database of everyone with a rare genetic disease. Nazi party FTW!! : ([/citation]
Think a bit before jumping in:
A DNA database is the only way rare genetic diseases get to be known. DNA is what makes our genes. Such a database would allow you or your relatives that suffer from such a disease to get the right diagnosis and therefore the correct treatment, if available. Also, it allows researchers to make the right links and to draw the appropriate conclusions regarding the etiology of such diseases.
Also, if it makes it easier to gather people with such diseases in order to run the study protocol, that saves a lot of money that can go into actual research instead of going into efforts to gather a population sample large enough to make it statistically significant. It allows researchers to cluster cases by genotypes in hope to find a common genetic denominator (marker) for each syndrome.
In short, it's a good thing. People that suffer from rare diseases tend to be affiliated somehow (genetic pooling in same family most of the times), so when a research is initiated and the sample population is built, instead of opening doors one by one for each patient, imagine opening a "door" behind which you find several patients at once. People still have to choose whether to enroll in a study or not.
Finally, research groups that get these grants for their work are more scrutinized than a newborn after being delivered. There is no way they could play the "nazi" game without anyone finding out about it the very next day. I wish other agencies could say the same about how they handle the types of data they gather from the population. This is the LAST on my worrying list.