Sharing genetic test results with family members of BRCA, PALB2, CHEK2, and ATM carriers.
Marleah Dean, Ann L Tezak, Sabrina Johnson and 5 others
PMID 33455826WHAT IT FOUND
Women with breast cancer gene variants shared results to protect relatives, but hesitated when they feared relatives' reactions, could not explain the genetics, or thought relatives were too old or distant.
Experiences were similar across genes.
Key findings
01Participants named six motivators for sharing results: health protection, moral obligation, empowering relatives' decisions, close family ties, written resources, and making family cancer history understandable.
02Participants named five barriers: concern about relatives' reactions, difficulty explaining complex information, lack of closeness, judging relatives too old or uninterested, and being emotionally overwhelmed.
03The motivators and barriers did not differ across BRCA, PALB2, CHEK2, and ATM carriers in this sample.
STILL TO COME
How it was doneWhat they foundWhat it means for RNs
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What it does not show
The women were recruited from people who had already agreed to research contact, so they may be more engaged than typical patients. Family sharing was reported by the women and was not checked with the relatives they said they told. The sample included only women with variants in BRCA, PALB2, CHEK2, or ATM, so it does not describe men or other relatives. Most participants were non-Hispanic White and had private insurance, which may limit transfer to other groups. The non-BRCA group was small (N=35), so findings for non-BRCA genes are less generalisable. One interview had a failed recording and was based on notes, which may have reduced detail. This is an exploratory study and does not test whether letters or counselling improve sharing.
Declared interests
The authors declared no conflict of interest. The article is listed as supported by NIH extramural research funds.
The easy way to misread this
Do not conclude that family sharing letters or counselling increase disclosure. This study only described women's experiences and did not test an intervention.