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. 2022 Feb 8;8(1):e31263. doi: 10.2196/31263

Table 4.

Information needs concerning the implications of genetic testing (GT) for patients.

Category and subcategory Example questions or comments
Cancer causes
  • Do I have a genetic mutation? Am I a carrier? (Ia)

  • I was curious to see if I had a genetic mutation for the cancer to begin with. (I)

  • What caused my cancer? Genetic mutation or my diet? (I)

  • My GT result indicates that I am at risk for breast cancer, but I had ovarian cancer, not breast cancer, I need an explanation. (I)

Clinical implications

Treatment
  • Can GT results affect my cancer treatment? If so, what are the effects? (I, Cb)

  • What type of chemotherapy do you get if positive for a BRCAc mutation? (C)

  • Will I have a harder time fighting off the cancer given that I have tested positive for the BRCA2 mutation? (C)


Preventative strategies to reduce cancer risks
  • What preventative measures can be done if the results come out positive? (I, C)

  • How do I know if I should follow the doctor’s advice regarding preventative surgery? (C)

Genetic discrimination

Insurance discrimination
  • Does anyone know of cases of insurance companies using a GT result to deny benefits to subscribers? (I)

  • Could the GT result be used against me to deny my healthcare or life insurance coverage? (I, C)

  • Is this going to affect my insurance later in my life? Am I going to have to pay more money somehow? (I)

  • Who has access to my GT information? Are there laws to protect us from genetic discrimination [vis-à-vis health insurance]? (I, C)


Employment discrimination
  • Can my GT result records be used to deny my employment? (I)

Lifestyle
  • Is there anything I can do in relation to lifestyle and diet to minimize any problems that might rise from the GT being positive for a mutation? (I)

  • If my genetic testing is abnormal, are there lifestyle or diet modifications that are helpful to reduce the risk of developing cancer? (I)

Communication with family
  • I was worried like if I had genetic mutations, at what point do I discuss this information with my children? (I)

  • How do I approach my family and talk to them about GT results? (I, C)

aIndicates that the example is from the interviews and co-design sessions.

bIndicates that the example is from the web-based community message analysis.

cBRCA: breast cancer gene.