Personalized Health Care Initiative Workshop: "Understanding the Needs of Consumers in the Use of Genome-based Health Information Services". Awareness and Understanding of Genetic Testing

07/07/2008

Familiarity with Genetic Testing

  • Consumers have heard of genetic testing, but feel their knowledge is limited.
Which of the following statements best describes how much you know about genetic testing?
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.
Feelings Toward Genetic Testing
How would you rate your feelings about genetic testing overall?
Extremely positive 31%
More Positive than negative 22%
Neutral 56%1
More negative than positive 11%
Extremely negative 0%

1."I would have to hear more about it"

 

chart

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.

Familiarity: Who...Why...Where?
Who is likely to get genetic testing Why do they need genetic testing? Where do they go to have it done, and by whom
  • Everyone(if possible)
  • Everybody
  • Children, parents, and grandchildren
  • Anyone interested in finding or helping cure diseases
  • People who suspect they have susceptibility of disease
  • People with a bad medical history
  • People with conditions that can't be diagnosed
  • Overweight man or woman
  • Babies and children
  • Children
  • Couples
  • Prospective parents
  • Pregnant women
  • People who can't get pregnant
  • To prevent future disease or lessen negative outcome of disease
  • To know if and what chance of having a baby with a disease
  • To plan a pregnancy
  • Suspicion of likelihood of disease
  • Better health for you and your family
  • Know how much time you have
  • Prevention
  • If predisposed to disease with family history
  • Future research to help others
  • Advances in medicine
  • Doctor's office
  • Hospital
  • University hospital
  • Specialist
  • DNA lab
  • Overseas
  • Approved facility

 

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" .
Perceived Benefits of Genetic Testing
"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
Knowledge about Test Meaning
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?
Desired Information Before Testing
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
Costs 5.5
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.

 

Information about Genetic Testing
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"
  • "WebMD"
  • "NIH website"
  • "Google search"
  • "someplace that is not trying to profit"
  • "my regular doctor"
  • "library"
  • "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.

Information Sources

  • 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.
Information Sources
Which of the following sources should be responsible for helping consumers be developing public information about genetic testing?
Doctors & other medical professionals 78%
Genetic counselors 56%
Companies that provide genetic health information services 44%
The government 22%

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:
    • FDA
    • AMA
    • Independent group of doctors
    • Well-known medical journal
    • "I would trust medical professional more than the government"

Detailed Findings

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