Communicating unexpected pharmacogenomic results to biobank contributors: A focus group study

Meagher, Karen M.; Curtis, Susan; Borucki, Sarah; Beck, Annika T.; Srinivasan, Tarika; Cheema, Amal W.

doi:10.1016/j.pec.2020.08.023

Cited by 8 publications

(9 citation statements)

References 64 publications

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“…Of these, 35 met eligibility criteria and were included in the analysis. An additional two articles were identified upon reference review of eligible articles and also included in the analysis, for a final total of 37 articles [ 1 , 21 , 22 , 23 , 24 , 25 , 26 , 27 , 28 , 29 , 30 , 31 , 32 , 33 , 34 , 35 , 36 , 37 , 38 , 39 , 40 , 41 , 42 , 43 , 44 , 45 , 46 , 47 , 48 , 49 , 50 , 51 , 52 , 53 , 54 , 55 , 56 ]. Figure 1 summarizes the identification and selection process for inclusion.…”

Section: Resultsmentioning

confidence: 99%

“…“Many participants wanted to understand the inheritance pattern of 5-FU toxicity. This was often expressed as a question about the chance that a given family member might have the variant of interest.” [ 55 ].…”

Section: Figurementioning

confidence: 99%

“…She didn’t seem alarmed. And to me, that killed the momentum of, ‘Okay, I need to share this,’ or anything along that nature.” [ 55 ].…”

Section: Figurementioning

confidence: 99%

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A Scoping Review of Attitudes and Experiences with Pharmacogenomic Testing among Patients and the General Public: Implications for Patient Counseling

Allen

Pittenger

Bishop

2022

JPM

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The use of pharmacogenomic (PGx) tests is increasing, but there are not standard approaches to counseling patients on their implications or results. To inform approaches for patient counseling, we conducted a scoping review of published literature on patient experiences with PGx testing and performed a thematic analysis of qualitative and quantitative reports. A structured scoping review was conducted using Joanna Briggs Institute guidance. The search identified 37 articles (involving n = 6252 participants) published between 2010 and 2021 from a diverse range of populations and using a variety of study methodologies. Thematic analysis identified five themes (reasons for testing/perceived benefit, understanding of results, psychological response, impact of testing on patient/provider relationship, concerns about testing/perceived harm) and 22 subthemes. These results provide valuable context and potential areas of focus during patient counseling on PGx. Many of the knowledge gaps, misunderstandings, and concerns that participants identified could be mitigated by pre- and post-test counseling. More research is needed on patients’ PGx literacy needs, along with the development of a standardized, open-source patient education curriculum and the development of validated PGx literacy assessment tools.

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Section: Resultsmentioning

confidence: 99%

Section: Figurementioning

confidence: 99%

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A Scoping Review of Attitudes and Experiences with Pharmacogenomic Testing among Patients and the General Public: Implications for Patient Counseling

Allen

Pittenger

Bishop

2022

JPM

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“…For participants in many focus groups (7 of 10), family history of cancer often informed the sense of importance, or value, participants attributed to their PGx results. 12 Other health outcome questions covered whether negative consequences of 5-FU exposure were reversible, how to clinically confirm test results, and how much DPD deficiency variants increased their risk. The few participants with more proximate possibilities of exposure described specific actions that they were able to take in relation to their health: FG2-5: "But then my husband looked at it, and he says, 'Oh, that's the drug that I've been using,' 'cause he has a precancerous disposition to his face, and he has done, several times, these face washes with fluorouracil.…”

Section: Theme (1): Participant Understanding Of Health Implicationsmentioning

confidence: 99%

“…An overview of emergent themes regarding recipients' understanding and valuation of results is described elsewhere. 12 Here, we provide a focused analysis explicating results specific to participants' word choices used to characterize druggene interactions. Specifically, we analyze how biobank contributors lacking familiarity with biomedical PGx terminology turned to more familiar health concepts to navigate subsequent clinical encounters.…”

Section: Introductionmentioning

confidence: 99%

Lay understandings of drug‐gene interactions: The right medication, the right dose, at the right time, but what are the right words?

Meagher

Finn

Curtis

et al. 2021

Clinical Translational Sci

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As pharmacogenomic (PGx) testing increases in popularity, lay concepts of druggene interactions set the stage for shared decision making in precision medicine.Few studies explore what recipients of PGx results think is happening in their bodies when a drug-gene interaction is discovered. To characterize biobank participants' understanding of PGx research results, we conducted a focus group study, which took place after PGx variants conferring increased risk of dihydropyrimidine dehydrogenase (DPD) deficiency were disclosed to biobank contributors. DPD deficiency confers an increased risk of adverse reaction to commonly used cancer chemotherapeutics. Ten focus groups were conducted, ranging from two to eight participants. Fifty-four individuals participated in focus groups. A framework approach was used for descriptive and explanatory analysis. Descriptive themes included participants' efforts to make sense of PGx findings as they related to: (1) health implications, (2) drugs, and (3) genetics. Explanatory analysis supplied a functional framework of how participant word choices can perform different purposes in PGx communication. Results bear three main implications for PGx research-related disclosure. First, participants' use of various terms suggest participants generally understanding their PGx results, including how positive PGx results differ from positive disease susceptibility genetic results. Second, PGx disclosure in biobanking can involve participant conflation of drug-gene interactions with allergies or other types of medical reactions. Third, the functional framework suggests a need to move beyond a deficit model of genetic literacy in PGx communication. Together, findings provide an initial evidence base for supporting bidirectional expert-recipient PGx results communication. Study Highlights WHAT IS THE CURRENT KNOWLEDGE ON THE TOPIC? Pharmacogenomic (PGx) testing is often the hallmark of personalized medicine, offering the ability to tailor prescriptions to specific patients. Although prior | 723 LAY UNDERSTANDINGS OF DRUG-GENE INTERACTIONS biobank community advisory board (CAB) members in Jacksonville, FL, and Rochester, MN, reviewed an initial draft of a proposal to disclose PGx results to CAB feedback informed revised. Revised disclosure materials are published elsewhere. 12 How to cite this article: Meagher KM, Stuttgen Finn K, Curtis SH, et al. Lay understandings of drug-gene interactions: The right medication, the right dose, at the right time, but what are the right words?

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Applying Pharmacogenomics in Drug Therapy of Cardiovascular Disease

Zhu

Takahashi

Pereira

et al. 2022

Comprehensive Pharmacology

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Communicating unexpected pharmacogenomic results to biobank contributors: A focus group study

Cited by 8 publications

References 64 publications

A Scoping Review of Attitudes and Experiences with Pharmacogenomic Testing among Patients and the General Public: Implications for Patient Counseling

A Scoping Review of Attitudes and Experiences with Pharmacogenomic Testing among Patients and the General Public: Implications for Patient Counseling

Lay understandings of drug‐gene interactions: The right medication, the right dose, at the right time, but what are the right words?

Applying Pharmacogenomics in Drug Therapy of Cardiovascular Disease

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