Your genetic information could save your life. Women who have been screened for the genetic mutations that increase their susceptibility to breast cancer—BRCA1 and BRCA2—can opt for more frequent screenings and preventive treatments. For patients who have cancer, genetic testing can help guide their therapeutic choices.
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But your genetic information—anything you know about your genetic history, heritage, and makeup—can also be used against you in ways that are unethical or discriminatory. In an age when this information is increasingly available, what are an employer’s ethical obligations toward the genetic information of employees—regardless of how or for what purpose it is obtained?
Ethical Guidance
The American College of Occupational and Environmental Medicine (ACOEM) published a position statement on genetic screening in the workplace in 2015 that offers some guiding principles for genetic information obtained by employers. In general, the ACOEM considers genetic screening to be subject to the same kinds of existing ethical standards, confidentiality considerations, and scientific practices as other types of medical testing or screening. In addition, genetic information should be used for the benefit of the person being screened.
The ACOEM recommends that workers’ genetic information be handled carefully with respect to:
- Applicable standards. The legal restrictions on obtaining and using genetic information are growing and changing along with the field, so it’s important to stay up to date. In addition to any relevant legal standards, employers should comply with applicable standards governing medical ethics and scientific practice.
- Validation of methods. The ACOEM points out that genetic screening that has not been extensively validated should be treated as a form of scientific investigation and conducted within that ethical and scientific framework.
- Reliability and predictive value of results. Not all genetic screening methods are equally reliable, nor are their results uniformly predictive. For example, women who carry the BRCA1 OR BRCA2 mutations are at increased risk of developing breast cancer—but the test is subject to false negatives and to incomplete information about which mutations are harmful. Genetic screening often gives ambiguous or inconclusive results. Any information obtained as the result of genetic screening should be evaluated with respect to these kinds of factors.
- The use and interpretation of the screening tests. According to the National Institutes of Health (NIH), “The results of genetic tests are not always straightforward, which often makes them challenging to interpret and explain.” These tests can predict increased risk, but not precisely, nor can they be used to predict the course or severity of the condition.
- The individual’s need for follow-up. Whenever genetic screening is performed, the individual being screened should have the opportunity to follow up with an appropriately trained professional to discuss the results.
For information on the purpose, methodology, validity, and usefulness of available genetic tests, the NIH maintains a searchable database: the Genetic Testing Registry.
Interesting. This post seems to be tilted slightly more toward the legal than the ethical. It does not mention perhaps the most important part of any genetic testing in the work place: making sure that employees know that they can opt out of any genetic testing and ensuring that there is no retaliation for opting out, i.e., that genetic testing is not a prerequisite for employment. Both this post and the article it linked to avoided the fact that any individual’s DNA is not just their individual DNA – it is their family’s shared DNA. What happens when relatives work at the same company and one chooses to get tested while another does not? In the case of close relatives, such as siblings, should consent be
required from both relatives in order to perform genetic screening on
either, since, in effect, the results for one will, at times, be the
results for both, and are likely to be interpreted as the results for both? How do we as a society put safeguards in place to prevent discrimination against the relative who did not get tested based on the results of the one who did? Many times employees are required to disclose relatives who work in the same company due to nepotism concerns. A final question: why does the company need to know the results of the genetic tests? Why not handle this the same way as other medical issues, where a doctor issues a note to the employer describing the employee’s limitations? After all, the note that states what the employee can and cannot do, and the environments in which he or she is medically able to work, is the most important part. If this cannot be provided with a reasonable degree of certainty, then why spend money on the test?