Canadian genetic healthcare professionals’ attitudes towards discussing private pay options with patients

Abstract

Background Just as there is inconsistency with respect to coverage of genomic testing with insurance carriers, there is interprovincial discrepancy in Canada. Consequently, the option of private pay (e.g., self pay) arises, which can lead to inequities in access, particularly when patients may not be aware of this option. There are currently no published data regarding how the Canadian genetics community handles discussions of private pay options with patients. The purpose of this study was to assess the attitudes of genetic healthcare professionals (GHPs: medical geneticists, genetic counselors, and genetic nurses) practicing in Canada toward these discussions. Methods An online survey was distributed to members of the Canadian College of Medical Geneticists and the Canadian Association of Genetic Counsellors to assess frequencies, rationale, and ethical considerations regarding these conversations. Quantitative data were analyzed using descriptive statistics. Results Of 144 respondents, 95% reported discussing private pay and 65% reported working in a clinic without a policy on this issue. There were geographic and practice‐specific differences. The most common circumstance for these discussions was when a test was clinically indicated (e.g., but funding was denied) followed by when the patient initiated the conversation. The most frequently discussed tests included: multi‐gene panels (73% of respondents), noninvasive prenatal testing (62%), and pre‐implantation genetic diagnosis (58%). Although 65% felt it was ethical to discuss private pay, 35% indicated it was “sometimes” ethical. Conclusion With the increasing availability of genomic technologies, these findings inform how we practice and demonstrate the need for policy in this area.

Out‐of‐pocket and private pay in clinical genetic testing: A scoping review

“…Following resolution of any discrepancies between reviewers, 83 publications were included in the final review (ordered alphabetically by primary author in Table 1). 8–90 A flow diagram tracking the number of studies at each stage of the selection process is presented in Figure 1.…”

“…Of the eighty‐three publications included in the review (Table 1), 8–90 seventy‐five (90.4%) were published since 2010 inclusive, and 48 (57.8%) since 2016 inclusive (Figure 2). The majority of studies were carried out in the United States ( n = 66; 79.5%), followed by the United Kingdom ( n = 5; 6.0%), Canada ( n = 3; 3.6%), and Australia ( n = 2; 2.4%) (Figure S1).…”

“…Salisbury (2019) presented a brief discussion on whether United Kingdom patients should pay for genetic testing 68 . We previously assessed the attitudes of genetic healthcare professionals practicing in Canada towards discussing private pay options for genetic testing with patients 69 . Although 137 of 144 (95%) members of the Canadian College of Medical Geneticists (CCMG) and the Canadian Association of Genetic Counsellors (CAGC) indicated that they discussed private pay with their patients, 65% reported that their clinic did not have a policy on the issue, and a further 13% were unaware as to whether a policy existed 69 .…”

“…69 Although 137 of 144 (95%) members of the Canadian College of Medical Geneticists (CCMG) and the Canadian Association of Genetic Counsellors (CAGC) indicated that they discussed private pay with their patients, 65% reported that their clinic did not have a policy on the issue, and a further 13% were unaware as to whether a policy existed. 69 The most common indications for discussing private pay related to a family history of cancer (multi-gene panels) and prenatal testing (NIPS and PGT). onwards, due to decreases in the cost of sequencing, a 2013 amendment to the US Affordable Care Act which clarified that BRCA testing was a covered preventive service for women with a qualifying family history, and the 2013 US court ruling against gene patents, which prompted the entry of companies offering less expensive testing.…”

“…68 We previously assessed the attitudes of genetic healthcare professionals practicing in Canada towards discussing private pay options for genetic testing with patients. 69 Although 137 of 144 (95%) members of the Canadian College of Medical Geneticists (CCMG) and the Canadian Association of Genetic Counsellors (CAGC) indicated that they discussed private pay with their patients, 65% reported that their clinic did not have a policy on the issue, and a further 13% were unaware as to whether a policy existed. 69 The most common indications for discussing private pay related to a family history of cancer (multi-gene panels) and prenatal testing (NIPS and PGT).…”