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Attitudes and Beliefs of African-Americans Toward Genetics, Genetic Testing, and Sickle Cell Disease Education and Awareness

  • Original Research
  • Published:
Journal of Genetic Counseling

Abstract

Research among African-Americans indicates this population perceives sickle cell (SCD) to be a serious disease and sickle cell trait (SCT) screening an important intervention. However, studies have consistently demonstrated a lower than desired uptake of SCD education, inadequate knowledge regarding personal and family trait status, and a low perceived susceptibility of giving birth to a child with the disease. We examined general attitudes and beliefs regarding genetics and genetic testing including prenatal testing and newborn screening; we used this information as the foundation to more specifically assess attitudes and beliefs regarding SCD and perceived barriers to SCD education and awareness. Thirty-five African-American adult men and women participated in one of four focus groups. Thematic analysis identified that both prenatal testing and newborn screening are acceptable forms of genetic testing. Based largely on their personal experiences, participants possessed an understanding of the natural progression of SCD but had a limited understanding of the inheritance and probable risk of giving birth to a child with the disease. Barriers to education and greater awareness of SCD were classified as personal, familial, and societal. Community based interventions focused on sharing the stories of individuals with first-hand experiences with SCD should be considered.

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Acknowledgements

This study was completed in partial fulfillment of the requirements for the first author’s Master of Science degree from the University of Pittsburgh. We are grateful for the financial resources to complete this project provided by the University of Pittsburgh Center for Minority Health, NIH National Institute on Minority Health and Health Disparities (PG60MD000207; S. Thomas, PI), and the Sickle Cell Program at Children’s Hospital of Pittsburgh.

Author information

Authors and Affiliations

  1. Department of Human Genetics, University of Pittsburgh, Pittsburgh, PA, USA

    Katie A. Long, Robin E. Grubs & Elizabeth A. Gettig

  2. Department of Health Services Administration, University of Maryland, College Park, MD, USA

    Stephen B. Thomas

  3. Division of Hematology, Oncology, and Bone Marrow Transplant, Children’s Hospital of Pittsburgh, Pittsburgh, PA, USA

    Lakshmanan Krishnamurti

  4. Children’s Hospital of Pittsburgh, One Children’s Hospital Drive, 4401 Penn Ave., Faculty Pavilion Suite 1200, Pittsburgh, PA, 15224, USA

    Katie A. Long

Authors
  1. Katie A. Long
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  2. Stephen B. Thomas
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  3. Robin E. Grubs
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  4. Elizabeth A. Gettig
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  5. Lakshmanan Krishnamurti
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Corresponding author

Correspondence to Katie A. Long.

Appendix

Appendix

We thank you for participating in this focus group. This survey is to gather information about the community’s interactions with genetics, genetic testing, and sickle cell. If there is a question that you do not feel comfortable answering, you can skip it and continue on. Please answer the following questions to the best of your ability. The survey should take approximately 10 minutes. We would like to thank you in advance for your willingness to participate in this study.

Section 1: General Information

  1. 1)

    What is your age?

    __ __ age in years

  2. 2)

    What is your gender?

    1. 1

      Male

    2. 2

      Female

  3. 3)

    Are you Hispanic or Latino?

    1. 1

      Yes

    2. 2

      No

    3. 3

      Don’t know

  4. 3a)

    Which one or more of the following would you say is your race? (Check all that apply)

    1. 1

      White

    2. 2

      Black or African American

    3. 3

      Asian

    4. 4

      Native Hawaiian or Other Pacific Islander

    5. 5

      American Indian, Alaska Native

    6. 6

      Other [specify] __________________________

  5. 4)

    What was the total household income from all sources last year?

    1. 1

      Less than $10,000

    2. 2

      Between $10,000 and $20,000

    3. 3

      Between $20,001 and $35,000

    4. 4

      Between $35,001 and $50,000

    5. 5

      Between $50,001 and $75,000

    6. 6

      Greater than $75,000

  6. 5)

    What is the highest grade or year of school you completed?

    1. 1

      Grades 8 or less (Elementary)

    2. 2

      Grades 9 through 11 (Some high school)

    3. 3

      Grade 12 or GED (High school graduate)

    4. 4

      College 1 year to 3 years (Some college or technical school)

    5. 5

      College 4 years or more (College graduate or post-graduate)

    6. 6

      Graduate level (Masters or PhD)

  7. 6)

    How would you rate your knowledge on genetics?

    1. 1

      Excellent

    2. 2

      Very good

    3. 3

      Good

    4. 4

      Fair

    5. 5

      Poor

  8. 7)

    How would you describe your general health?

    1. 1

      Excellent

    2. 2

      Very good

    3. 3

      Good

    4. 4

      Fair

    5. 5

      Poor

  9. 8)

    Do you smoke?

    1. 1

      Yes

    2. 2

      No

  10. 9)

    How would you describe your weight?

    1. 1

      Underweight

    2. 2

      Healthy weight

    3. 3

      Overweight

    4. 4

      Obese

  11. 10)

    Do you have one person you think of as your personal doctor or health care provider?

    1. 1

      Yes, only one

    2. 2

      More than one

    3. 3

      No

    4. 4

      Don’t know / Not sure

  12. 11)

    Was there a time in the past 12 months when you needed to see a doctor but could not because of the cost?

    1. 1

      1 Yes

    2. 2

      No

    3. 3

      Don’t know / Not sure

  13. 12)

    Do you have any kind of health care coverage, including health insurance, prepaid plans such as HMOs, or government plans such as Medicare?

    1. 1

      Yes

    2. 2

      No

    3. 3

      Don’t know / Not sure

Section 2: Sickle Cell and Newborn Screening

  1. 13)

    Do you know your sickle cell trait status?

    1. 1

      Yes

    2. 2

      No

    3. 3

      Don’t know

  2. 14)

    Do you know your partner/spouse’s sickle cell trait status?

    1. 1

      Yes

    2. 2

      No

    3. 3

      Don’t know

    4. 4

      Not applicable

  3. 15)

    Do you have children?

    1. 1

      Yes

    2. 2

      No

  4. 16)

    If you answered “Yes” to the previous question, do you know your child’s sickle cell trait status?

    1. 1

      Yes

    2. 2

      No

    3. 3

      Don’t know

  5. 17)

    Do you know someone with sickle cell disease?

    1. 1

      Yes

    2. 2

      No

    3. 3

      Don’t know

  6. 18)

    Do you know someone with sickle cell trait?

    1. 1

      Yes

    2. 2

      No

    3. 3

      Don’t know

  7. 19)

    Do you know someone that was found to have sickle cell disease or trait by newborn screening?

    1. 1

      Yes

    2. 2

      No

    3. 3

      Don’t know

Focus Group Guide

  1. I.

    Introduction (10 min)

    Good afternoon/evening and welcome to our session. Thank you for taking the time to join our discussion on genetics, genetic testing, and sickle cell. My name is ____ and I am with the Healthy Black Family Project from the Center for Minority Health at the University of Pittsburgh. Assisting me is _____ who will be taking notes on the conversation during the focus group. Please begin by filling out the survey in front of you by circling your answers. We will begin when everyone has completed this form.

    You have been invited because you are a member of the Healthy Black Family Project and your opinions on genetics, genetic testing, and sickle cell are important to us. Our research team is trying to understand the attitudes and beliefs of African-Americans toward these issues. We would like to hear your opinions. We will ask you a number of questions and we need your honest thoughts and ideas. Please feel free to share your point of view especially if it is different from what others have said. There are no wrong answers, only different points of view.

    Now, let me share some ground rules. We want to make sure that everyone feels comfortable expressing his or her own opinion. We ask that you are respectful of everyone by listening to one another and waiting until the person speaking has finished before you begin. Please do not have side conversations with your neighbor during the discussion. All of your comments are helpful and would provide us with useful information. We have placed cards on the table in front of you to help us remember your names during the focus group.

    As you have probably noticed, we have a microphone on the table. We will be tape recording our discussion so that we don’t miss any of your comments. To assure you of your confidentiality, we will only be using the names you selected for today and will not use any names in our final reports.

    The group discussion will last about 2 hours so please feel free to enjoy your meal as we begin. We will have a 10-minute break. You should have already completed the brief survey and we will collect it before we begin.

  2. II.

    Assessing Knowledge of Genetics

    Question 1

    • Where do you receive trusted medical information?

      • Probe: From a Physician, Nurse, Pharmacist, Friend/Family member, TV, radio, newspaper, internet, seminar, etc.?

      • Probe: Why is this your most trusted source of medical information?

    Question 2

    • What comes to mind when you hear the word “genetic” or “genetics”?

      • Probe: Where have you heard this word? Who has used the word?

      • Probe: How do you think “things” are passed down to or inherited from one generation to another? Why?

  3. III.

    Assessing Knowledge of Prenatal Testing and Newborn Screening for Genetic Conditions

    Question 3

    • When you hear the words “prenatal testing” what does it mean to you?

      [Definition shared if no one answers: Prenatal testing is testing performed on the developing baby while a woman is pregnant. It can be used to gather information about genetic health conditions in the baby.]

      • Probe: Are there benefits of prenatal testing? What are these benefits? Why?

      • Probe: Are there risks of prenatal testing? What are these risks? Why?

      • Probe: Would you want to know if your baby had a genetic condition?

    Question 4

    • When you hear the phrase “newborn screening” what do you think of?

      • Probe: This is also referred to as the “heel stick test.”

      [Definition shared if no one answers: Newborn screening is testing performed on the newborn baby before leaving the hospital. A small sample of blood is obtained from the baby’s heel to test for rare genetic diseases that are life-threatening but where early intervention or treatment has an impact on disease outcome.]

      • Probe: Where have you heard the phrase used?

      • Probe: Who has used it?

      • Probe: Under what conditions or circumstances has it been used?

      • Probe: What kind of information would you like to know before a child’s blood is taken?

      • Probe: Are there benefits of newborn screening? What are these benefits? Why?

      • Probe: Are there risks of newborn screening? What are these risks? Why?

      • Probe: Would you want to know if your child had a genetic condition?

  4. IV.

    Assessing Understanding of Sickle Cell Disease

    Question 5

    • What is sickle cell disease?

      • Probe: Where have you heard this condition discussed?

      • Probe: What is the difference between the sickle cell disease and sickle cell trait?

      • Probe: Do you think one is more serious than the other? Why?

      • Probe: How does someone get sickle cell?

  5. V.

    Assessing Perceived Risk of Sickle Cell

    Question 6

    • Earlier we talked about how things are inherited or genetics, do you think there is a risk in your family to have a future child or grandchild with sickle cell trait? Do you think there is a risk in your family to have a future child or grandchild with sickle cell disease?

      • Probe: Why or why not?

  6. VI.

    Assessing Opinions on Sickle Cell and Newborn Screening

    Question 7

    • Scenario: It is three days after the birth of your child and you just found out your child has sickle cell disease. How helpful would this information be to you?

    • If your child had sickle cell trait, how helpful would this information be to you?

      • Probe: What would you do with this information?

  7. VII.

    Assessing Ideas on Community Education Interventions

    Question 8

    • How can the community help parents become more aware of information about sickle cell?

  8. VIII.

    Closing

    Thank you for your time and energy given to this discussion. It was a pleasure listening to your thoughts and opinions. We will need your signature to indicate you have received your $25 gift certificate before you leave.

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Long, K.A., Thomas, S.B., Grubs, R.E. et al. Attitudes and Beliefs of African-Americans Toward Genetics, Genetic Testing, and Sickle Cell Disease Education and Awareness. J Genet Counsel 20, 572–592 (2011). https://doi.org/10.1007/s10897-011-9388-3

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