. 2019 Jul 8;28(1):108–113. doi: 10.1038/s41431-019-0426-1

Table 2.

Case studies

Name^a and situation	History of cancer	Risk reduction	Life insurance applications	Appeals	Summary
Case 1: Evelyn 47 y/o BRCA1 variant detected at age 41	No	Bilateral preventative mastectomy and oophorectomy	Financial advisor unable to secure any cover in 2018. “They tried everywhere, but as soon as they mentioned BRCA1, they could not get me any insurance”	Yes Appeal made by financial advisor, unsuccessful “They went back to them and said, ‘look, she’s got no breast tissue, she’s got no ovaries’, but apparently it didn’t matter”	• After receiving positive genetic test results and risk information, Evelyn undertook elective preventative double mastectomy and removal of ovaries/fallopian tubes • In early 2018, after completing surgeries, Evelyn met with a financial advisor and applied for life, income protection and disability insurance. All applications were rejected • Evelyn’s financial advisor appealed the decisions, without success. No actuarial justification was provided
Case 2: Melanie 31 y/o Lynch syndrome mutation detected in early 20s	No	Annual colonoscopy and bi-annual gastroscopy; prophylactic gynaecological surgery not recommended until late 30s	Financial adviser advised application would be rejected	No. “Once they heard that I had the gene, they said they’ve tried with other people with that sort of thing and it doesn’t usually get approved, so it wasn’t worth bothering”	• Melanie commenced surveillance for Lynch syndrome after a positive genetic test result in her early 20s • She undertakes annual colonoscopies, bi-annual gastroscopies, as recommended by her specialist, and is considering hysterectomy (recommended at a later age) • Melanie applied for life insurance through a financial advisor, but was advised her application was rejected because of her “condition”, despite no cancer symptoms
Case 3: Faith 46 y/o Lynch syndrome mutation detected in early 30s	No	Hysterectomy, oophorectomy, annual colonoscopy, endoscopy	Underwriter at superannuation provider advised that a loading of 100% would be applied to cover (2018)	No Currently considering options	• On specialist advice, Faith undertakes regular surveillance (annual colonoscopy/endoscopy) and had a hysterectomy and oophorectomy • In 2018, Faith applied for increased cover for life, disability and income protection insurance through her superannuation She advised the underwriter of her risk reduction • She was informed that her genetic status would mean loading of the premium by 100%, making her life insurance cover twice as expensive as standard cover

Name^a and situation

History of cancer

Risk reduction

Life insurance applications

Appeals

Summary

Case 1: Evelyn

47 y/o

BRCA1 variant detected at age 41

Bilateral preventative mastectomy and oophorectomy

Financial advisor unable to secure any cover in 2018.

“They tried everywhere, but as soon as they mentioned BRCA1, they could not get me any insurance”

Yes

Appeal made by financial advisor, unsuccessful

“They went back to them and said, ‘look, she’s got no breast tissue, she’s got no ovaries’, but apparently it didn’t matter”

• After receiving positive genetic test results and risk information, Evelyn undertook elective preventative double mastectomy and removal of ovaries/fallopian tubes

• In early 2018, after completing surgeries, Evelyn met with a financial advisor and applied for life, income protection and disability insurance. All applications were rejected

• Evelyn’s financial advisor appealed the decisions, without success. No actuarial justification was provided

Case 2: Melanie

31 y/o

Lynch syndrome mutation detected in early 20s

Annual colonoscopy and bi-annual gastroscopy; prophylactic gynaecological surgery not recommended until late 30s

Financial adviser advised application would be rejected

No.

“Once they heard that I had the gene, they said they’ve tried with other people with that sort of thing and it doesn’t usually get approved, so it wasn’t worth bothering”

• Melanie commenced surveillance for Lynch syndrome after a positive genetic test result in her early 20s

• She undertakes annual colonoscopies, bi-annual gastroscopies, as recommended by her specialist, and is considering hysterectomy (recommended at a later age)

• Melanie applied for life insurance through a financial advisor, but was advised her application was rejected because of her “condition”, despite no cancer symptoms

Case 3: Faith

46 y/o

Lynch syndrome mutation detected in early 30s

Hysterectomy, oophorectomy, annual colonoscopy, endoscopy

Underwriter at superannuation provider advised that a loading of 100% would be applied to cover (2018)

Currently considering options

• On specialist advice, Faith undertakes regular surveillance (annual colonoscopy/endoscopy) and had a hysterectomy and oophorectomy

• In 2018, Faith applied for increased cover for life, disability and income protection insurance through her superannuation She advised the underwriter of her risk reduction

• She was informed that her genetic status would mean loading of the premium by 100%, making her life insurance cover twice as expensive as standard cover

^aNames changed for confidentiality