Quick Question September 2022 Results: Would you do genetic testing if offered for free by a nonprofit?

large white question mark with black text asking Would you do genetic testing for FTD if offered for free by an established nonprofit like the Registry?

More than 950 people (70%) said “Yes” to the FTD Disorder Registry’s September 2022 Quick Question. There were 1,381 people who responded to the monthly poll.

More than 950 people (70%) said “Yes” to the FTD Disorder Registry’s September 2022 Quick Question: Would you do genetic testing for FTD if offered for free by an established nonprofit like the Registry?

There were 1,381 people who responded to the monthly poll. Of those, 191 people (14%) said they would not do genetic testing, and 224 (16%) indicated that it would depend on various reasons as to whether they would or would not choose to be tested.

People were offered the main options of “Yes,” “No,” and “It depends on.” After making this selection, they then picked the reason(s) for this choice. Multiple responses were allowed, including write-in answers for “It depends on.”

Of those who responded “Yes,” the number one reason was to “know my family’s risk (633). This was followed by a distant second and third of “so that I may qualify for a clinical trial to test a treatment” (342) and “more trust in a program offered by a nonprofit like the Registry” (324).

Of those who responded “No,” the top two reasons were:

not interested in genetic counseling or testing (77)
to learn about my family’s risk until there are proven treatments (60)

Top considerations for those who responded to “It depends on …” included:

if I can receive my results (87)
who will see my results (85)
if it will help bring about effective treatments (80)
if I can get free, confidential genetic counseling (75)
what I learn during genetic counseling (70)

The 45 write-in answers to “It depends on …” covered similar topics including:

all ready tested (10)
insurance concerns (9)
privacy concerns (8)
location of testing and travel considerations (7)
type of test required (3).

In addition, several people (8) felt it was up to others to decide whether to undergo genetic counseling and testing.

Of those who wrote in, some had already been tested but expressed interest in re-testing if new FTD genes were identified.

Responses were received from people in 26 countries around the world with the most coming from the United States (1,249) followed by Canada (67), the United Kingdom and Northern Ireland (20), and Australia (14).

Additionally, answers came from people in all 50 U.S. states as well as the District of Columbia (9) and Puerto Rico (1). The top five states with the highest number of respondents were California (119), New York (89), Texas (75), New Jersey (67), and Pennsylvania (65).

RESULTS

The following charts and lists are based on 1,381 submissions.

chart of those who would do genetic testing if offered for free by a nonprofit like the Registry: 633 want to know family's risk 342 want to know to qualify for a clinical trial 324 would trust a program offered by a nonprofit like the Registry 189 have been looking for free genetic testing 119 have been trying to get genetic counseling and testing

Yes, 966 responses (70%):

7% I have been trying to get genetic counseling and testing
12% I have been looking for free genetic counseling and testing
20% I would have more trust in a program offered by a nonprofit like the Registry
40% I want to know my family’s risk
21% I want to know so that I may qualify for a clinical trial to test a treatment

No, 191 responses (14%):

7.5% I was already tested and was positive
9% I was already tested and was negative
36% I am not interested in genetic counseling or testing
5% I have been told there is no gene for my type of FTD
3% I do not want to learn more about my disease
28% I do not want to learn about my family’s risk until there are proven treatments
4% I do not want others to see my results
7.5% I am worried about losing insurance

It depends on … 224 responses (16%):

8% What I learn during genetic counseling
10% Who will see my results
9% If I can get free, confidential genetic counseling
3% If my doctor recommends it
6% If it will help confirm diagnosis
6% If my family agrees that it is the right step
7% If it will cover all FTD genes
2% If I can choose what genes I’m tested for
4.5% If it will affect my treatment options
6% If there is an available, proven treatment
5% If there is an available, experimental treatment in clinical trials
9.5% If it will help bring about effective treatments
10% If I can receive my results
3% If I do not have to receive my results
2% If my referring clinician will receive my results
5% If only the genetic counselor and I will get the results
5% Other (write-in)

chart identifying the respondents who answered the question Would you do genetic testing for FTD if offered for free by a nonprofit like the Registry? 524 biological family members 307 people answering on behalf of an FTD-diagnosed person 210 caregivers 183 persons diagnosed with FTD 138 spouses 19 blank

Identify yourself results:

13% A person diagnosed with FTD
38% Biological family member, answering for myself
15% Spouse, answering for myself
10% Caregiver, answering for myself
22.5% Answering on behalf of an FTD-diagnosed person (family member, caregiver, friend)
1.5% Blank