Attitudes of Patients With Cancer About Personalized Medicine and Somatic Genetic Testing

Abstract

Purpose: Dramatic advances in genomic technology stand to revolutionize cancer care; however, little is known about patients' understanding and acceptance of personalized medicine and widespread genetic testing (GT). Patients and Methods:We conducted a formative, semistructured interview study with a random sample of patients with lung, colorectal, and breast cancers to assess awareness of personalized medicine and GT and attitudes about somatic GT. Willingness to undergo GT was elicited through hypothetic scenarios.Results: Sixty-nine patients participated; 71% were women; 42% were black; median age was 59 years; and 42% had an education level Ն college. We found that a majority of patients either were not aware of the term "personalized medicine" or defined it in unexpected ways. Although many patients identified relevant benefits of somatic testing (eg, informs treatment), many patients also expressed significant concerns (ie, psychological harm and discrimination). A majority of patients expressed a willingness to undergo somatic (predictive, 96%, prognostic, 93%) and germline (cancer risk without incidental information, 87%; cancer risk with incidental information, 81%; pharmacogenetic, 91%) testing; however, far fewer patients expressed a willingness to undergo full genome sequencing (62%). Reluctance was attributed to concerns over incidental findings, information overload, and the lack of a clear benefit. Conclusion:Many patients relayed misunderstandings about somatic testing and a reluctance to undergo full sequencing; oncologists must carefully consider how they present testing to patients so that concerns over discrimination and psychological harm do not hinder test uptake. More work is needed to identify effective ways to communicate complex genomic concepts to patients and research participants.

Attitudes regarding privacy of genomic information in personalized cancer therapy

“…Our findings on attitudes to the general protection of genomic data are similar to those of previous studies. 4 14 The study focused on newly registered female patients, most of whom had had breast cancer for less than a year (70%). Therefore, our results may not be generalizable to men or patients with other cancers or other diseases.…”

The Relevance of Hereditary Cancer Risks to Precision Oncology: What Should Providers Consider When Conducting Tumor Genomic Profiling?

“…Cancer patients eligible for TGP may have limited pretest awareness or understanding of hereditary cancer risk or how genes are related to this, or may also not understand how a tumor test differs from a germline test. 30,31 They are also unlikely to be aware of the potential impact TGP may have on family members, or how a potential risk would be verified and the possible related costs. Most importantly, patients for whom a TGP is to be ordered may not appreciate the need to state their preferences regarding discovery of information related to hereditary cancer risk, nor the potential to opt out of pursuing/receiving such information if they choose.…”

Genetic testing for the risk of developing late effects among survivors of childhood cancer: Consumer understanding, acceptance, and willingness to pay

“…While parents hypothetically consider the benefits and risks of testing within the confines of a research study, our results are consistent with previous studies indicating that parents usually favor predictive testing for their children due to perceived benefits. 8,13,17,20 Previous research suggests theoretical models such as the HBM, 24 as used in this study, can explain the relationship between participants' perceptions and testing intentions. 14,16,21,28 Specifically, those who view genetic testing positively, and perceive that potential benefits can be accrued, are more likely to undergo testing.…”

“…11 The potential psychological impacts, along with concerns regarding family planning, fertility, lifestyle choices and health management, 5,12 indicate individualized management and genetic counseling should remain a priority. 3,10 A large body of research has investigated public [13][14][15][16][17] and patient 1,3,[18][19][20][21][22] perceptions of genetic testing, and reported that despite low levels of understanding, perceived benefits outweigh the risks. Patients' most highly-rated benefits include increased knowledge, better outcomes, and more effective prevention strategies.…”

“…Patients' most highly-rated benefits include increased knowledge, better outcomes, and more effective prevention strategies. 3,13,15,18,20,22 …”