Public Attitudes Toward Genetic Risk Testing and Its Role in Healthcare

Holly Etchegary

Disclosures

Personalized Medicine. 2014;11(5):509-522. 

In This Article

Why Study Public Attitudes?

Pragmatically, it is useful to anticipate potential demand for genetic tests and technologies and to use public opinion data in the design and implementation of testing services. Understanding people's knowledge and attitudes about genetic testing may help expose information gaps, misunderstandings and areas of concern so that genetic services can be designed to meet public expectations and needs.[4–6] From a public health perspective, public attitude research is critical to understand whether and under what conditions the provision of genetic risk information will lead to positive behavior changes and associated health outcomes.[5,7–8] Indeed, scientific knowledge about the contribution of genes to the common, chronic diseases such as cancer, diabetes and heart disease may pave the way for genome-guided healthcare and preventive medicine.[9,10] Such hopes can only be realized, however, if the public accepts and engages with genomics.

New genetic developments, including DTC testing and expanded newborn screening panels, have raised a host of ethical, legal and social concerns, including the clinical validity and utility of the tests, as well as whether such tests are offered with the appropriate guidance of qualified healthcare professionals and acceptable informed consent and parent education models.[3,11–14] In order to foster public trust in genomic developments, it is important to study their views on such ethical and social issues raised by genetic testing. Finally, increased use of testing is anticipated, particularly as the cost of whole-genome sequencing (WGS) declines and its use in clinical care increases.[15,16] Attending to public perspectives on these new genomic developments in healthcare could assist in their ethical and equitable implementation and usage.

There is now a robust literature on public attitudes toward genetics. In general, attitudes are positive about genetic research and new genomic technologies. However, this positivity is complex, and is driven by beliefs about the type of genetic research, the uses of testing, the clinical utility of tests, and the area of genetics in which testing is applied (e.g., medical applications vs cloning).[5] In this paper, selected literature on public knowledge and attitudes toward genetics and genetic testing is reviewed, including whether attitudes are related to positive health behavior change and patient compliance. Limitations of current attitude research are noted and suggestions offered for future research.

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