More and more tests for medical conditions are becoming available, and
as their sophistication increases, so does the level of skill needed to
understand their results. Yet all the evidence suggests that people – from
the patient to the doctor to the insurance provider – are not prepared or
not willing to deal with the complexity of information such tests can produce.
Scientists still have much to learn about the ways in which people will
deal with information about the state of their health. We desperately need
to find out more about what patients understand and remember about testing,
what advice their doctors offer, and what of this information they pass
on to their families. And we need to be assured that both advisers and
advised can understand concepts of risk and probability.
The problems are apparent in two different gene tests, both discussed
in this issue. Screening for the gene for cystic fibrosis provides the first
example (see This Week). Present screening tests can identify most, but
not all, carriers, so there is a slight chance that someone who has a negative
result could still be a carrier. The first studies coming out of the US
show that some people understand this and that the uncertainty deters them
from having a test. Other studies show that a few people who decide to take
a test ‘forget’ their result or fail to inform their partner of it.
A second set of problems is presented by tests, likely to be available
in the near future, for carriers of the so-called breast cancer gene (see
‘Breast cancer: a lethal inheritance’, this issue). A carrier is likely,
but not certain, to get breast cancer, and if she does it may (or may not)
be curable. A ‘positive result’ therefore presents the patient with a list
of new questions. Will she develop cancer? Will she detect it earlier than
she would have if she had not taken the test? Can she take steps to prevent
the disease? Will treatment work if it’s needed?
The onus is on doctors, counsellors and insurance companies to ensure
that they fully understand these complex issues themselves. Otherwise they
will fail to foresee patients’ needs and leave them frustrated by poor answers
to their questions.