Doctors strive for balance between knowledge and patient privacy | Slone Partners

One of most immediate benefits of genetic testing has been those procedures that inform parents whether their newborn children are likely to suffer from certain conditions, either immediately or later in life. The effectiveness of these tests in helping doctors to administer treatments sooner has caused some to advocate that more disorders be tested for in the weeks following birth, even though there is less documented knowledge about some of these conditions.

Detractors are concerned primarily with privacy issues, which this blog has reported on extensively in recent weeks. Many parents of children that have undergone a genetic test and the patients themselves have expressed concern that their genetic information could be used for research purposes without their consent. Some in the medical community have expressed the need for a more targeted approach to genetic screening.

"A problem with incorporating … screening [of lesser known conditions] into state screening programs is the 'all-or-nothing' constraint," University of Chicago medical ethicist Dr. Lainie Ross told NewsMedical.net. "Parents cannot say that they want their child to be tested for some conditions and not others. There is simply not enough available information on many [of these conditions] to justify overriding the ethical standard of parental informed consent."

Some researchers are optimistic that – to address this concern – two levels of testing can be instituted going forward. The first would be a mandatory test for conditions that doctors have largely reached a consensus about, while the second level of testing would require specific parental consent and would focus on another set of conditions that still require more research.

As researchers try to extract the maximum amount of information possible from genetic testing materials, they must also place an emphasis on protecting patient information. Diagnostic laboratories should remain actively involved in ensuring data is handled properly, especially as genetic testing becomes a more common practice.

This article is brought to you by Slone Partners, a leading laboratory recruitment firm in the emerging sciences of molecular, clinical, and in-vitro diagnostics, anatomic pathology and personalized medicine.

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