Communication of cancer-related genetic and genomic information: A landscape analysis of reviews

Abstract

Cancer-related genetic and genomic testing (CGT) is changing cancer care by personalizing care options, leading to an era of precision medicine. Advances in and increased use of CGT add complexity to clinical communication. This landscape analysis assessed published reviews of communication issues related to CGT and discusses implications for practice and behavioral research. A comprehensive electronic literature search was conducted of peer-reviewed literature reviews on studies related to CGT communication published between January 2010 and January 2017, resulting in a final sample of 24 reviews. Reviews were categorized, with overlaps, into four domains across the genetic testing communication continuum. Reviews on CGT-related knowledge, attitudes, and perceptions (n = 8) found that despite substantial public interest, their knowledge and awareness remains low. Providers also reported insufficient knowledge and overall caution, particularly regarding direct-to-consumer (DTC) genetic testing. Reviews of decision-making about CGT and test uptake (n = 8) identified individual, interpersonal, and systems-level barriers to uptake. Reviews of patient-provider CGT communication (n = 8) revealed limited communication and little empirical research on outcomes of communication or efforts at improving clinical and family communication. There were mixed findings in reviews (n = 15) on the psychological and behavioral impact of CGT, and DTC testing particularly had little effect on behaviors. Taken together, there is very little extant research in CGT in minority and underserved communities. In order for scientific advances in CGT to translate into equitable, patient-centered care, behavioral research, including health literacy and communication, plays critical roles.

Understanding and information needs of cancer patients regarding treatment‐focused genomic testing: A systematic review

“…To date, there have been only a handful of systematic reviews focusing on the experiences of cancer patients related to genomic testing and most of them focused on germline testing rather than somatic testing and the implications on personalised therapies . While those systematic reviews explored important matters such as psychological distress, communication preferences, and decision‐making processes, none of them focused on the understanding of genomic testing and information needs of cancer patients.…”

Patterns and Determinants of Attitudes towards Genetic Risk of Cancer: Case Study in a Malaysian Public University

“…Hence, research efforts to simplify such information for effective communication to the public are implied. Recent literature research on cancer-related genetic/genomic testing has exposed the inadequacy of effective provider-patient communication due, in part, to a lack of systematic studies in health literacy and communication [ 14 ]. This lack of research in communication practices by health professionals on cancer genetic risk and testing is further substantiated in a study by Hamilton et al [ 32 ].…”

“…In many developing and underdeveloped countries, it is not even fully certain whether canonical risk factors (lifestyle and environment) are a public concern, let alone genetic risk. In a recent review study on cancer-related genetic and genomic testing, a lack of existing research on awareness and communication of this matter in minority and underserved communities is revealed [ 14 ]. The case of Malaysia alone is an indication of general public ignorance.…”

Genetic Testing: Do Cancer Care Nurses Have a Role?

“…[ 7 ] Genetic testing is now available for some hereditary cancers and is now an integral part of cancer prevention, early detection services, and treatment. [ 1 8 ] Cancer gene testing presents many challenges that could include access, cost, risks, benefits, privacy, stigmatization, discrimination, ethical issues, and psychosocial implications of the results. [ 9 10 ] Peterson et al .…”

“…[ 9 10 ] Peterson et al . [ 8 ] found that genetic testing resulted in distress and alienation in some male partners of women who underwent genetic testing for breast cancer, but women who found that they have an increased risk for breast cancer became more engaged in risk reduction behaviors such as breast self-examinations, mammograms, and preventative surgeries. In spite of these challenges and issues, a study found that primary care providers expressed skepticism about the clinical value of genetic testing and were concerned about clients’ privacy issues and discrimination by insurance companies and employers.…”