Was it worth it? Patients’ perspectives on the perceived value of genomic-based individualized medicine

Colin M.E. Halverson, Kristin E. Clift, Jennifer B. McCormick

Research output: Contribution to journalArticle

16 Citations (Scopus)

Abstract

The value of genomic sequencing is often understood in terms of its ability to affect diagnosis or treatment. In these terms, successes occur only in a minority of cases. This paper presents views from patients who had exome sequencing done clinically to explore how they perceive the utility of genomic medicine. The authors used semi-structured, qualitative interviews in order to study patients’ attitudes toward genomic sequencing in oncology and rare-disease settings. Participants from 37 cases were interviewed. In terms of the testing’s key values—regardless of having received what clinicians described as meaningful results—participants expressed four qualities that are separate from traditional views of clinical utility: Participants felt they had been empowered over their own health. They felt they had contributed altruistically to the progress of genomic technology in medicine. They felt their suffering had been legitimated. They also felt a sense of closure, having done everything they could. Patients expressed overwhelmingly positive attitudes toward sequencing. Their rationale was not solely based on the results’ clinical utility. It is important for clinicians to understand this non-medical reasoning as it pertains to patient decision-making and informed consent.

Original languageEnglish (US)
Pages (from-to)145-152
Number of pages8
JournalJournal of Community Genetics
Volume7
Issue number2
DOIs
StatePublished - Apr 1 2016

Fingerprint

Precision Medicine
Medicine
Exome
Aptitude
Rare Diseases
Informed Consent
Psychological Stress
Decision Making
Interviews
Technology
Health
Therapeutics

All Science Journal Classification (ASJC) codes

  • Epidemiology
  • Public Health, Environmental and Occupational Health
  • Genetics(clinical)

Cite this

@article{012568d0068e4a589d87a41d4a81c1ab,
title = "Was it worth it? Patients’ perspectives on the perceived value of genomic-based individualized medicine",
abstract = "The value of genomic sequencing is often understood in terms of its ability to affect diagnosis or treatment. In these terms, successes occur only in a minority of cases. This paper presents views from patients who had exome sequencing done clinically to explore how they perceive the utility of genomic medicine. The authors used semi-structured, qualitative interviews in order to study patients’ attitudes toward genomic sequencing in oncology and rare-disease settings. Participants from 37 cases were interviewed. In terms of the testing’s key values—regardless of having received what clinicians described as meaningful results—participants expressed four qualities that are separate from traditional views of clinical utility: Participants felt they had been empowered over their own health. They felt they had contributed altruistically to the progress of genomic technology in medicine. They felt their suffering had been legitimated. They also felt a sense of closure, having done everything they could. Patients expressed overwhelmingly positive attitudes toward sequencing. Their rationale was not solely based on the results’ clinical utility. It is important for clinicians to understand this non-medical reasoning as it pertains to patient decision-making and informed consent.",
author = "Halverson, {Colin M.E.} and Clift, {Kristin E.} and McCormick, {Jennifer B.}",
year = "2016",
month = "4",
day = "1",
doi = "10.1007/s12687-016-0260-x",
language = "English (US)",
volume = "7",
pages = "145--152",
journal = "Journal of Community Genetics",
issn = "1868-310X",
publisher = "Springer Verlag",
number = "2",

}

Was it worth it? Patients’ perspectives on the perceived value of genomic-based individualized medicine. / Halverson, Colin M.E.; Clift, Kristin E.; McCormick, Jennifer B.

In: Journal of Community Genetics, Vol. 7, No. 2, 01.04.2016, p. 145-152.

Research output: Contribution to journalArticle

TY - JOUR

T1 - Was it worth it? Patients’ perspectives on the perceived value of genomic-based individualized medicine

AU - Halverson, Colin M.E.

AU - Clift, Kristin E.

AU - McCormick, Jennifer B.

PY - 2016/4/1

Y1 - 2016/4/1

N2 - The value of genomic sequencing is often understood in terms of its ability to affect diagnosis or treatment. In these terms, successes occur only in a minority of cases. This paper presents views from patients who had exome sequencing done clinically to explore how they perceive the utility of genomic medicine. The authors used semi-structured, qualitative interviews in order to study patients’ attitudes toward genomic sequencing in oncology and rare-disease settings. Participants from 37 cases were interviewed. In terms of the testing’s key values—regardless of having received what clinicians described as meaningful results—participants expressed four qualities that are separate from traditional views of clinical utility: Participants felt they had been empowered over their own health. They felt they had contributed altruistically to the progress of genomic technology in medicine. They felt their suffering had been legitimated. They also felt a sense of closure, having done everything they could. Patients expressed overwhelmingly positive attitudes toward sequencing. Their rationale was not solely based on the results’ clinical utility. It is important for clinicians to understand this non-medical reasoning as it pertains to patient decision-making and informed consent.

AB - The value of genomic sequencing is often understood in terms of its ability to affect diagnosis or treatment. In these terms, successes occur only in a minority of cases. This paper presents views from patients who had exome sequencing done clinically to explore how they perceive the utility of genomic medicine. The authors used semi-structured, qualitative interviews in order to study patients’ attitudes toward genomic sequencing in oncology and rare-disease settings. Participants from 37 cases were interviewed. In terms of the testing’s key values—regardless of having received what clinicians described as meaningful results—participants expressed four qualities that are separate from traditional views of clinical utility: Participants felt they had been empowered over their own health. They felt they had contributed altruistically to the progress of genomic technology in medicine. They felt their suffering had been legitimated. They also felt a sense of closure, having done everything they could. Patients expressed overwhelmingly positive attitudes toward sequencing. Their rationale was not solely based on the results’ clinical utility. It is important for clinicians to understand this non-medical reasoning as it pertains to patient decision-making and informed consent.

UR - http://www.scopus.com/inward/record.url?scp=84957695802&partnerID=8YFLogxK

UR - http://www.scopus.com/inward/citedby.url?scp=84957695802&partnerID=8YFLogxK

U2 - 10.1007/s12687-016-0260-x

DO - 10.1007/s12687-016-0260-x

M3 - Article

AN - SCOPUS:84957695802

VL - 7

SP - 145

EP - 152

JO - Journal of Community Genetics

JF - Journal of Community Genetics

SN - 1868-310X

IS - 2

ER -