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Public perspectives on the use of preimplantation genetic diagnosis

  • Assisted Reproduction Technologies
  • Published:
Journal of Assisted Reproduction and Genetics Aims and scope Submit manuscript

Abstract

Purpose

To study the perspectives of the United States population towards the use of preimplantation genetic diagnosis (PGD) in various clinical scenarios.

Methods

Online cross-sectional population based questionnaire of a nationally representative sample according to age, gender, race/ethnicity, income, education and religion.

Results

A total of 1006 completed the questionnaire with an overall response rate of 94 %. A majority supported PGD for diseases fatal early in life or those causing lifelong disability (72.9 and 66.7 %, respectively); only 48.0 % supported PGD for diseases that manifest late in life. Respondents were more supportive of PGD for genetic diseases if they were aware of PGD prior to the survey (OR = 1.64; CI = 1.13–2.39). However, a small proportion were in favor of genetically-based trait selection: 21.1 % supported PGD for sex selection, 14.6 % for physical traits and 18.9 % for personality traits. Compared to women, men were nearly two- to three-fold more supportive of PGD for sex selection (OR = 1.65; CI = 1.20–2.78), physical traits (OR = 2.38; CI = 1.60–3.48) and personality traits (OR = 2.31; CI = 1.64–3.26). Compared to Caucasians, Asians (OR = 3.87; CI = 1.71–8.78) and African Americans (OR = 1.61; CI = 1.04–2.74) were more supportive of PGD for sex selection.

Conclusions

In a nationally representative sample, a majority supported PGD to identify early onset diseases. We noted significant variation in opinions by sex, race, and education. There was more support among those with prior knowledge of PGD suggesting that education about PGD may foster favorable opinions. This study identifies public knowledge and attitudes that may be used to shape future research hypotheses and clinical policies.

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References

  1. Baruch S, Kaufman D, Hudson KL. Genetic testing of embryos: practices and perspectives of US in vitro fertilization clinics. Fertil Steril. 2008;89(5):1053–1058. Available at: http://www.ncbi.nlm.nih.gov/pubmed/17628552.

  2. Basille C, Frydman R, El Aly A, et al. Preimplantation genetic diagnosis: state of the art. Eur J Obstet Gynecol Reprod Biol. 2009;145(1):9–13. Available at: http://www.ncbi.nlm.nih.gov/pubmed/19411132. Accessed 14 July 2014.

  3. Soini S, Ibarreta D, Anastasiadou V, et al. The interface between assisted reproductive technologies and genetics: technical, social, ethical and legal issues. Eur J Hum Genet. 2006;14(5):588–645. Available at: http://www.ncbi.nlm.nih.gov/pubmed/16636693. Accessed 14 July 2014.

  4. Hens K, Dondorp W, Handyside AH, et al. Dynamics and ethics of comprehensive preimplantation genetic testing: a review of the challenges. Hum Reprod Update. 2013;19(4):366–75. Available at: http://www.ncbi.nlm.nih.gov/pubmed/23466750. Accessed 14 July 2014.

  5. Milner KK, Collins EE, Connors GR, Petty EM. Attitudes of young adults to prenatal screening and genetic correction for human attributes and psychiatric conditions. Am J Med Genet. 1998;76(2):111–9. Available at: http://www.ncbi.nlm.nih.gov/pubmed/9511972.

  6. Hathaway F, Burns E, Ostrer H. Consumers’ desire towards current and prospective reproductive genetic testing. J Genet Couns. 2009;18(2):137–146. Available at: http://www.ncbi.nlm.nih.gov/pubmed/19160030.

  7. Pergament E. Preimplantation diagnosis: a patient perspective. Prenat Diagn. 1991;11(8):493–500. Available at: http://www.ncbi.nlm.nih.gov/pubmed/1766924.

  8. Miedzybrodzka Z, Templeton A, Dean J, Haites N, Mollison J, Smith N. Preimplantation diagnosis or chorionic villus biopsy? Women’s attitudes and preferences. Hum Reprod. 1993;8(12):2192–2196. Available at: http://www.ncbi.nlm.nih.gov/pubmed/8150923.

  9. Krones T, Schluter E, Manolopoulos K, et al. Public, expert and patients’ opinions on preimplantation genetic diagnosis (PGD) in Germany. Reprod Biomed Online. 2005;10(1):116–123. Available at: http://www.ncbi.nlm.nih.gov/pubmed/15705307.

  10. Fortuny D, Balmana J, Grana B, et al. Opinion about reproductive decision making among individuals undergoing BRCA1/2 genetic testing in a multicentre Spanish cohort. Hum Reprod. 2009;24(4):1000–1006. Available at: http://www.ncbi.nlm.nih.gov/pubmed/19112076.

  11. Michie S, Drake H, Marteau T, Bobrow M. A comparison of public and professionals’ attitudes towards genetic developments. Public Underst Sci. 1995;4(3):243–53.

    Article  Google Scholar 

  12. Campbell E, Ross LF. Attitudes of healthcare professionals and parents regarding genetic testing for violent traits in childhood. J Med Ethics. 2004;30(6):580–6. Available at: http://www.pubmedcentral.nih.gov/articlerender.fcgi?artid=1733973&tool=pmcentrez&rendertype=abstract. Accessed 18 July 2014.

  13. Whittaker AM. Reproduction opportunists in the new global sex trade: PGD and non-medical sex selection. Reprod Biomed Online. 2011;23(5):609–617. Available at: http://www.ncbi.nlm.nih.gov/pubmed/21975224.

  14. Hudson K, Scott J. Public awareness and attitudes about genetic technology. Washington DC; 2002.

  15. U.S. Census Bureau. 2012 American Community Survey. Available at: http://www.census.gov/. Accessed 6 May 2014.

  16. Hui PW, Lam YH, Chen M, et al. Attitude of at-risk subjects towards preimplantation genetic diagnosis of alpha- and beta-thalassaemias in Hong Kong. Prenat Diagn. 2002;22(6):508–11. Available at: http://www.ncbi.nlm.nih.gov/pubmed/12116317.

  17. Chamayou S, Guglielmino a, Giambona a, et al. Attitude of potential users in Sicily towards preimplantation genetic diagnosis for beta-thalassaemia and aneuploidies. Hum Reprod. 1998;13(7):1936–44. Available at: http://www.ncbi.nlm.nih.gov/pubmed/9740453.

  18. Balmaña J, Díez O, Rubio IT, Cardoso F. BRCA in breast cancer: ESMO Clinical Practice Guidelines. Ann Oncol. 2011;22 Suppl 6(Supplement 6):vi31–4. Available at: http://www.ncbi.nlm.nih.gov/pubmed/21908500. Accessed 7 August 2014.

  19. Meister U, Finck C, Stöbel-Richter Y, Schmutzer G, Brähler E. Knowledge and attitudes towards preimplantation genetic diagnosis in Germany. Hum Reprod. 2005;20(1):231–8. Available at: http://www.ncbi.nlm.nih.gov/pubmed/15471929. Accessed 16 July 2014.

  20. Lammens C, Bleiker E, Aaronson N, et al. Attitude towards pre-implantation genetic diagnosis for hereditary cancer. Fam Cancer. 2009;8(4):457–64. Available at: http://www.pubmedcentral.nih.gov/articlerender.fcgi?artid=2771132&tool=pmcentrez&rendertype=abstract. Accessed 16 July 2014.

  21. Aro AR, Hakonen A, Hietala M, et al. Acceptance of genetic testing in a general population: age, education and gender differences. Patient Educ Couns. 1997;32(1–2):41–9. Available at: http://www.ncbi.nlm.nih.gov/pubmed/9355571.

  22. Aula P, Hietala M, Miemela P. Miten suomalaiset suhtautuvat geenitesteihin. Duodecim. 1996;32(112):95–102.

    Google Scholar 

  23. Percentage of Individuals using the Internet 2000–2012. Int Telecommun Union. 2013. Available at: http://www.itu.int/en/ITU-D/Statistics/Documents/statistics/2013/Individuals_Internet_2000-2012.xls.

  24. Language Use in the United States. US Census Bur. 2007. Available at: http://www.census.gov/hhes/socdemo/language/data/acs/ACS-12.pdf.

Download references

Conflict of interest

There are no conflicts of interest for any of the authors

Author information

Authors and Affiliations

  1. Department of Obstetrics, Gynecology and Reproductive Medicine, University of California San Francisco, 505 Parnassus Ave., M1483, Box 0132, San Francisco, CA, 94143, USA

    William D. Winkelman

  2. Department of Obstetrics, Gynecology, and Reproductive Biology, Brigham and Women’s Hospital and Harvard Medical School, 75 Francis Street, Boston, MA, 02115, USA

    William D. Winkelman, Stacey A. Missmer, Dale Myers & Elizabeth S. Ginsburg

  3. Department of Epidemiology, Harvard School of Public Health, 677 Huntington Avenue, Boston, MA, 02115, USA

    Stacey A. Missmer

  4. Channing Division of Network Medicine, Department of Medicine, Brigham and Women’s Hospital and Harvard Medical School, 75 Francis Street, Boston, MA, 02115, USA

    Stacey A. Missmer

Authors
  1. William D. Winkelman
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  2. Stacey A. Missmer
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  3. Dale Myers
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  4. Elizabeth S. Ginsburg
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Corresponding author

Correspondence to William D. Winkelman.

Additional information

Capsule Attitudes of the general public concerning the use of preimplantation genetic diagnosis vary by sex, race, and education.

Appendix 1: Questionnaire

Appendix 1: Questionnaire

Section 1

When a woman’s egg and a man’s sperm join, they form a fertilized egg which then grows into an embryo and can eventually lead to a pregnancy. This part of the survey asks you your opinions on whether doctors should provide genetic diagnosis of human embryos before pregnancy.

Preimplantation genetic diagnosis, or “PGD” is a procedure that takes place in a lab with test tubes and can be used to identify specific diseases in embryos before a woman gets pregnant. PGD can detect diseases that are fatal in the first few years of life as well as diseases that can cause significant disabilities throughout a person’s life. Patients who decide to undergo PGD must first agree to undergo in vitro fertilization where the woman’s egg and the man’s sperm are combined outside the human body in order to form a fertilized egg which then grows into an embryo. In PGD, one or two cells from an embryo are removed and tested for various diseases. If a specific disease is identified then the embryo is discarded. If there is no identified disease then the embryo is placed in the woman’s uterus with the ultimate goal of a healthy baby.

Questions

In the following questions, please indicate the answer that best reflects your own personal beliefs. There is no right or wrong answer.

  1. 1.

    Doctors should be able to perform PGD to screen for diseases that are fatal in the first few years of life.

    1. a.

      Strongly agree

    2. b.

      Agree

    3. c.

      Neither agree nor disagree

    4. d.

      Disagree

    5. e.

      Strongly disagree

  2. 2.

    Doctors should be able to perform PGD to screen for diseases that cause lifelong disability such as mental retardation or deafness.

    1. a.

      Strongly agree

    2. b.

      Agree

    3. c.

      Neither agree nor disagree

    4. d.

      Disagree

    5. e.

      Strongly disagree

  3. 3.

    Doctors should be able to perform PGD to screen for diseases that may not occur until later in life, such as diseases that place an individual at a high risk of cancer during adulthood.

    1. a.

      Strongly agree

    2. b.

      Agree

    3. c.

      Neither agree nor disagree

    4. d.

      Disagree

    5. e.

      Strongly disagree

  4. 4.

    If you “agree” or “strongly agree” to questions 2, 3 or 4 that doctors should be able to perform PGD, which of the following statements best describes your reasons? (Please select all that apply)

    1. a.

      Couples should be able to make their own decisions about having a child

    2. b.

      PGD improves the chances that a couple will have a healthy child

    3. c.

      PGD will lower healthcare costs and may result in a better society

    4. d.

      PGD can eliminate certain genetic diseases forever

    5. e.

      Other, please specify:

  5. 5.

    If you “disagree” or “strongly disagree” to questions 2, 3 or 4 that doctors should be able to perform PGD, which of the following statements best describes your reasons? (Please select all that apply)

    1. a.

      PGD leads to the unnecessary destruction of embryos

    2. b.

      PGD promotes discrimination against people with certain diseases

    3. c.

      PGD interferes with nature and places doctors in the role of “playing God”

    4. d.

      Widespread use of PGD may lead to unforeseen consequences

    5. e.

      There is no regulation of PGD

    6. f.

      Other, please specify:

Additional background information for participants

While PGD is a procedure that is most commonly used to identify diseases, in the future it potentially could be used to test for physical characteristics, personality traits, abilities, or sexual orientation. Again, please indicate the answer that best reflects your own personal beliefs. There is no right or wrong answer.

  1. 6.

    Doctors should be able to perform PGD for sex selection

    1. a.

      Strongly agree

    2. b.

      Agree

    3. c.

      Neither agree nor disagree

    4. d.

      Disagree

    5. e.

      Strongly disagree

  2. 7.

    Doctors should be able to perform PGD to screen for physical characteristics such as height, eye color or athleticism.

    1. a.

      Strongly agree

    2. b.

      Agree

    3. c.

      Neither agree nor disagree

    4. d.

      Disagree

    5. e.

      Strongly disagree

  3. 8.

    Doctors should be able to perform PGD to screen for personality traits such as intelligence or aggression.

    1. a.

      Strongly agree

    2. b.

      Agree

    3. c.

      Neither agree nor disagree

    4. d.

      Disagree

    5. e.

      Strongly disagree

  4. 9.

    Doctors should be able to perform PGD to screen for sexual orientation such as homosexuality

    1. a.

      Strongly agree

    2. b.

      Agree

    3. c.

      Neither agree nor disagree

    4. d.

      Disagree

    5. e.

      Strongly disagree

  5. 10.

    If you “agree” or “strongly agree” to questions 7, 8, 9 or 10 that doctors should be able to use of PGD for selection of ideal traits, which of the following statements best describes your reasons? (Please select all that apply)

    1. a.

      Couples should be able to make their own decisions about having a child

    2. b.

      Selecting ideal traits will help a child lead a successful life

    3. c.

      Selecting ideal traits will result in a better society

    4. d.

      Other, please specify:

  6. 11.

    If you “disagree” or “strongly disagree” to questions 7, 8, 9 or 10 that doctors should be able to use of PGD for selection of ideal traits, which of the following statements best describes your reasons? (Please select all that apply)

    1. a.

      PGD leads to the unnecessary destruction of embryos

    2. b.

      PGD promotes discrimination against people with certain characteristics

    3. c.

      PGD interferes with nature and places doctors in the role of “playing God”

    4. d.

      Widespread use of PGD may lead to unforeseen consequences

    5. e.

      There is no regulation of PGD

    6. f.

      Other, please specify:

Section 2

This section asks you for some basic background information. This information is for research reasons only. It will not be used to identify you in any way.

For each of the following questions, please select the answer that best describes you

  1. 1.

    What is your gender?

    1. a.

      Male

    2. b.

      Female

  2. 2.

    What is your age?

    1. a.

      (Numerical values from 18 to 75)

  3. 3.

    What is your ethnicity?

    1. a.

      Hispanic or Latino

    2. b.

      Not Hispanic or Latino

  4. 4.

    What is your race? (select all that apply)

    1. a.

      American Indian or Alaska Native

    2. b.

      Asian

    3. c.

      Black or African American

    4. d.

      Native Hawaiian or Pacific Islander

    5. e.

      White

    6. f.

      Other

  5. 5.

    In which state do you live?

    1. a.

      (Dropdown menu of all 50 states)

  6. 6.

    What is your approximate household income?

    1. a.

      $20,000 or less

    2. b.

      $20,000–$40,000

    3. c.

      $40,001–$60,000

    4. d.

      $60,001–$80,000

    5. e.

      More than $80,000

  7. 7.

    What is your religion?

    1. a.

      Christian – Protestant

    2. b.

      Christian – Catholic

    3. c.

      Jewish

    4. d.

      Muslim

    5. e.

      Hindu

    6. f.

      Atheist/Agnostic

    7. g.

      Other, please specify:

  8. 8.

    Which of the following best describes your level of education?

    1. a.

      Some high school or less

    2. b.

      High school diploma or GED

    3. c.

      Some college

    4. d.

      College degree

    5. e.

      Some graduate school

    6. f.

      Graduate or professional degree

  9. 9.

    Prior to this study have you ever heard of preimplantation genetic diagnosis (PGD)?

    1. a.

      Yes

    2. b.

      No

  10. 10.

    Do you personally know anyone with a genetic or developmental disorder?

    1. a.

      Yes

    2. b.

      No

  11. 11.

    Do you personally know anyone who required the help of assisted reproductive technology to achieve a healthy pregnancy?

    1. a.

      Yes

    2. b.

      No

  12. 12.

    How many biological children do you have?

    1. a.

      0

    2. b.

      1

    3. c.

      2

    4. d.

      3

    5. e.

      4

    6. f.

      More than 4

Thank you for taking the time to participate in our study.

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Winkelman, W.D., Missmer, S.A., Myers, D. et al. Public perspectives on the use of preimplantation genetic diagnosis. J Assist Reprod Genet 32, 665–675 (2015). https://doi.org/10.1007/s10815-015-0456-8

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  • DOI: https://doi.org/10.1007/s10815-015-0456-8

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