Grant: Travel Awards - Institute Community Support
Unity Health Toronto
$1,500.00
Prepared to live with the unknown: Adult cancer patients' experiences with uncertainty when deciding to learn incidental genomic sequencing results
FY 2019-20
Summary
Genomic sequencing is a relatively new type of genetic test that looks broadly at most of an individual's genetic code. This test can be used to identify whether people are at risk for hereditary conditions, such as hereditary cancer syndromes. This can be useful for making decisions about how patients and their family members are managed clinically. However, genomic sequencing can also identify genetic predisposition for many other types of diseases, called "incidental results." Incidental results are very uncertain. It is uncertain if or even when the diseases associated with them will occur. Patients deciding if they would like to learn these types of results, and what types of incidental results they would like to learn, may feel uncertain. This study used qualitative interviews to explore how adults who had a history of cancer experienced uncertainty when making decisions about learning incidental genomic sequencing results. Fifteen participants were interviewed. From interviews, it was found that experiences with cancer uncertainty helped participants accept uncertainty related to incidental results. Participants viewed incidental results as valuable information, even though the information could be uncertain. Participants felt prepared to manage uncertainty in a variety of ways, such as through information seeking, support from healthcare providers, or trying not to focus on uncertainty. In conclusion, cancer experiences fostered participants' tolerance of uncertainty related to incidental results, and heightened the perceived value of incidental results.These findings provide insight into how patients experience uncertainty when considering learning incidental results from genomic sequencing, which could inform genetic counseling for incidental results.
Department
Program
Travel Awards - Institute Community Support
Recipient
Location
Ontario, Canada
Recipient Type
Other
Type
Grant
Source
CIHR Funding Decisions Database
As published
Id
412154
Name
Mighton Chloe E
Region
Ontario
Country
Canada
Orgtype
Institution Paid; Research Institution
Instname2
Health Services and Policy Research
Theme2
Health systems / services
Prcname2
Institute of Health Services and Policy Research
Projecttitle
Prepared to live with the unknown: Adult cancer patients' experiences with uncertainty when deciding to learn incidental genomic sequencing results
Programtype2
Undefined
Orgnameinp2
Unity Health Toronto
Cihramount2
$1,500
Cihrequipment2
$0
Programname2
Travel Awards - Institute Community Support
Keyworddelim
Cancer; Genomic Sequencing; Health Services Research; Health Technology Assessment; Patient Experiences; Qualitative Methods; Uncertainty
Abstract
Genomic sequencing is a relatively new type of genetic test that looks broadly at most of an individual's genetic code. This test can be used to identify whether people are at risk for hereditary conditions, such as hereditary cancer syndromes. This can be useful for making decisions about how patients and their family members are managed clinically. However, genomic sequencing can also identify genetic predisposition for many other types of diseases, called "incidental results." Incidental results are very uncertain. It is uncertain if or even when the diseases associated with them will occur. Patients deciding if they would like to learn these types of results, and what types of incidental results they would like to learn, may feel uncertain. This study used qualitative interviews to explore how adults who had a history of cancer experienced uncertainty when making decisions about learning incidental genomic sequencing results. Fifteen participants were interviewed. From interviews, it was found that experiences with cancer uncertainty helped participants accept uncertainty related to incidental results. Participants viewed incidental results as valuable information, even though the information could be uncertain. Participants felt prepared to manage uncertainty in a variety of ways, such as through information seeking, support from healthcare providers, or trying not to focus on uncertainty. In conclusion, cancer experiences fostered participants' tolerance of uncertainty related to incidental results, and heightened the perceived value of incidental results.These findings provide insight into how patients experience uncertainty when considering learning incidental results from genomic sequencing, which could inform genetic counseling for incidental results.
Competitiondate
201909
Approvedterm2
1 yr 0 mth
Pinamesdelim
Mighton, Chloe E
Approvedterm
1 an 0 mois
Cihrcontribution2
Inst of Hlth Serv & Policy Res~ $1,500~ $0~