Familiarity with Genetic Testing
- Consumers have heard of genetic testing, but feel their knowledge is limited.
|I have not heard anything about genetic testing||0%|
|I have not heard of genetic testing, but I do not know much about it||56%|
|I know quite a bit about genetic testing||44%|
|I know quite a bit about genetic testing||0%|
|I consider myself an expert on genetic testing||0%|
Feelings Toward Genetic Testing
- Many consumers say their overall feelings about genetic testing are neutral, largely because they don't know enough about it to have an informed opinion.
|How would you rate your feelings about genetic testing overall?|
|More Positive than negative||22%|
|More negative than positive||11%|
1."I would have to hear more about it"
Familiarity: What is Genetic Testing --- Four green rectangles with text inside:("A procedure used to find out the make-up of a person");("Completing a series of tests, to determine various things such as health concerns");("screening for susceptibility to genetically transfered diseases through different means");("research based on gene or DNA identification to help determine an effect on someone or condition related to his/her genetics and family"), counter-clockwise, respectively . Inside the four triangle diagram are four circles with text inside:("History -cell make up,ethnic background, family, paternity"); ("Risk - Disease Carrier, Preganancy Planning, long- term health);("Information- research, advanced, future, computers);(Healthcare --doctor, insurance, cost, healthcare & prevention), clockwise, respectively.
|Who is likely to get genetic testing||Why do they need genetic testing?||Where do they go to have it done, and by whom|
Familiarity: Direct-to Consumer Services
- None of the participants in this study were aware that they could currently purchase genetic testing from an online company
- One respondent, though, was not surprised because "you can buy everything else online".
- They also had no idea about cost for the test, with estimates ranging from $20 to $2500 for testing for one disease.
- Most were skeptical of the accuracy of the test
- Worrying that their test would get mixed up with someone else's
- While most consumers said they would consider having the test done online, they remained skeptical
- And all said that if the online test came back positive they would go to the doctor to take another test
- All consumers also said that they would take their results to their doctor for interpretation
Perceived Benefits of Genetic Testing
- Consumers say that genetic testing is valuable because it provides information about their health, and gives them the opportunity to seek treatment.
- In contrast, a negative test result is not the end of the story. Many said that just because a test is negative does not mean that you shouldn't continue to have screenings and check-ups because "the test are not a guarantee -you could still get the disease" .
|"Genetic testing is valuable because....Mean, with scale:1 (Strongly Disagree) to 6 (Strongly Agree)"|
|It can provide relief from uncertainty about the risk of getting a disease (you know your risk)||4.9|
|A negative test result can eliminate the need for unnecessary checkups and screening tests||2.8|
|A positive result can direct a person toward available prevention, monitoring and treatment options.||5.4|
Knowledge about Test Meaning
- Most consumers understand that genetic testing will tell them their risk level of developing a disease rather than a certainty of developing that disease
|If you have genetic testing for cancer-- which of the following describes what the test will tell you?|
|Whether I will have a higher that average risk of developing cancer in the future --89%||Whether I will definately get cancer in the future-11%|
Desired Information Before Testing
- Above all, accuracy of the test was the most important information for consumers.
- Consumers also wanted to know about basic logistics of the test-- what is the process? Where would I go for the test? How much time would it take? What would it involove?
|If you were looking for information on genetic testing, how important is each of the following types of information to you? Mean, with scale: 1(Not at all important to 7 (Extremely important)|
|Accuracy of the testing services||6.3|
|How a clinician would utilize this information in decision-making||5.2|
|Scientific basis for the testing||4.9|
|How information will be used (privacy)||4.8|
|Risks from testing (discrimination by others, insurers, employers, etc.)||4.2|
Information about Genetic Testing
- Most consumers believe that information on genetic testing is out there, and their go-to sources for information would be the Internet or their doctor.
|When it comes to fiding information that would help consumers use genetic information to improve their health, do think such information is:|
|Easy enough to find||44%|
|Somewhat difficult to find||44%|
|Very difficult to find||0%|
Where would you go to find information about genetic testing?2
- "the Internet"
- "a reliable approved website"
- "NIH website"
- "Google search"
- "someplace that is not trying to profit"
- "my regular doctor"
- "a college, university, or other non-biased source"
note-size of lettering reflects more mentions, such that the internet, with largest font, was most often mentioned.
- Consumers believe that doctors, other medical professionals and genetic counselors should be involved in developing public information about genetic testing.
- In contrast, most consumers did not expect (or want) the government to be involved in developing information.
- However, if asked whether the FDA should be involved they were somewhat more open to the possibility.
- The concept of "government" did not elicit favorable reactions.
|Which of the following sources should be responsible for helping consumers be developing public information about genetic testing?|
|Doctors & other medical professionals||78%|
|Companies that provide genetic health information services||44%|
Regulation & Industry Standards for Testing
- Consumers wanted a "reputable organization" to create an industry standard to help consumers identify which companies were trustworthy for gentic testing
- The organizations mentioned included:
- Independent group of doctors
- Well-known medical journal
- "I would trust medical professional more than the government"
"doc es.pdf" (pdf, 39.8Kb)
"agenda.pdf" (pdf, 24.1Kb)
"transcript.pdf" (pdf, 296.07Kb)
"bodhaine.pdf" (pdf, 393.36Kb)
"phelan.pdf" (pdf, 346.22Kb)