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Psychooncology. 2018 Apr;27(4):1327-1333. doi: 10.1002/pon.4676. Epub 2018 Mar 24.

Managing unsolicited findings in genomics: A qualitative interview study with cancer patients.

Author information

1
Cancer Center, Department of Medical Oncology, University Medical Center Utrecht, Utrecht, Netherlands.
2
Julius Center, Department of Medical Humanities, University Medical Center Utrecht, Utrecht, Netherlands.
3
Department of Corporate Communications, University Medical Center Utrecht, Utrecht, Netherlands.
4
Julius Center for Health Sciences and Primary Care, University Medical Center Utrecht, Utrecht, Netherlands.
5
Department of Genetics, University Medical Center Utrecht, Utrecht, Netherlands.
6
Netherlands Cancer Institute Antoni van Leeuwenhoek, Department of Medical Oncology, Amsterdam, Netherlands.

Abstract

OBJECTIVE:

Next-generation sequencing (NGS) is increasingly being employed in the context of personalized cancer treatment. Anticipating unsolicited findings that may arise during a NGS procedure is a key consideration; however, little is known about cancer patients' intentions, needs, and preferences concerning the return of unsolicited findings.

METHODS:

A qualitative design using individual semi-structured interviews with 24 cancer patients was utilized to explore patients' decisions on whether to receive unsolicited findings from NGS. These interviews were subsequently analyzed using the constant comparative method to develop codes and themes.

RESULTS:

We identified 4 interrelated themes that emerged in the context of the return of unsolicited findings. First, we describe how cancer patients expressed a strong need to control their lives. Second, we show the importance of family dynamics. Third, the NGS procedure regarding unsolicited findings is perceived as cognitively complex, and fourth, the procedure is also considered emotionally complex.

CONCLUSIONS:

The results of our study contribute to a better understanding of what cancer patients consider important and what may motivate and influence them when making decisions on the disclosure of unsolicited findings following NGS. We show how Joel Feinberg's classification of autonomy may help clinicians to better understand cancer patients' desire for autonomous decision making while also acknowledging the emotional and cognitive difficulties regarding the disclosure of unsolicited findings. These insights could be helpful for clinicians to guide patients through this complex process.

KEYWORDS:

autonomy; cancer; ethic; family dynamics; incidental finding; next-generation sequencing; oncology; unsolicited finding

PMID:
29471587
DOI:
10.1002/pon.4676

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