Consent model for tumour genetic testing in ovarian cancer
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Authors
Fierheller,Caitlin T.
Leung,Elaine Y. L.
Alcaraz,Marie-Lyne
Gootzen,Tamar
Miles,Tracie
Platt,Marie-Claire
Sundar,Sudha
Ganesan,Raji
Manchanda,Ranjit
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Issue Date
2025
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Article
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Abstract
Prospective parallel genetic testing of both germline and tumour DNA in ovarian cancer patients (OC) is the recommended model in several different countries across the globe and the UK. The high (∼67%) chance of identifying germline PVs in patients with tumour PVs has led to a discourse surrounding the need for consent for tumour genetic testing in OC. We discussed with OC patients during focus group workshops, physicians, and charity representatives about consent options for tumour testing in OC patients: verbal consent prior to testing (Option 1) and reflex testing (Option 2). Most patients (97%; 33/34) did not feel that consent was required and were happy with reflex testing (Option 2). Physician consensus was that reflex testing was preferred and most charity representatives (4/5; 80%) agreed. All groups wanted an opt-out option and a patient information sheet about tumour testing. This can inform new recommendations in the UK and foster further discussions regarding consent for OC tumour testing.; All patients with ovarian cancer should be offered genetic testing on their blood and their tumour. Genetic testing of blood requires informed consent, but it is unclear if genetic testing of tumours requires the same. In the UK, it is recommended that verbal consent is given for tumour genetic testing (Option 1). Another option, called reflex testing, does not require patient consent for tumour genetic testing (Option 2). We asked patients, physicians, and ovarian cancer charity representatives how acceptable they found the two options.We held focus groups with patients and provided information about the two options. Physicians discussed the options during a consensus meeting. We separately discussed the options with representatives from five UK ovarian cancer charities.Most patients with ovarian cancer (33 out of 34) felt that Option 2 was acceptable. They did not find it necessary to ask for consent for tumour genetic testing. All patients wanted to be informed about this and provided further information if needed. Patients suggested an opt-out option as an alternative to the two options presented. Option 2 was preferred by physicians. Most charity representatives (4 out of 5) supported Option 2 with an opt-out choice.We found that tumour genetic testing without formal consent is acceptable. This should include an opt-out option and opportunity for additional information.
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Journal
Journal of obstetrics and gynaecology : the journal of the Institute of Obstetrics and Gynaecology
Volume
45
Issue
1