"Before providing [DNA] specimens, patients are increasingly looking
for compensation, commitments that useful medical information will be
returned to them, or control over how their biological samples will be
studied."
They are concerned about real problems, but proposing ineffective or
useless solutions.
Under a well-run medical system, where advances in treatment and
diagnosis are put to the service of everyone, and you don't risk
commercial disadvantage or punishment due to whatever is in your
sample, the chance that people will be cured because of one's
contribution would be all the reason anyone needs to contribute. But
instead we have a system with real problems.
One real problem is that under the US medical system, new treatments
are in many cases too expensive for them. Another real problem is that
insurance companies may use their DNA samples against them, and the state
could accuse them of crimes based on those samples.
The "solutions" people ask for do very little to fix these problems,
because they are individual "solutions" for a systemic problem. Any
reasonable "compensation" for a DNA sample won't be enough to pay for
an expensive treatment. Researchers could agree to provide whatever
useful medical information they discover, but can't promise to
discover anything useful for that particular patient. As for "how"
the samples will be studied, it is hard to relate that to one's own
interest.