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Reasons for being in favour of or against genome modification: a survey of the Dutch general public.
Hum Reprod Open 2018; 2018(3):hoy008HR

Abstract

STUDY QUESTION

What are the general public's reasons for being in favour of or against the use of genome modification for five potential applications?

SUMMARY ANSWER

Overall, 43 reasons for being in favour, 45 reasons for being against as well as 26 conditional reasons for the use of genome modification were identified.

WHAT IS KNOWN ALREADY

Various applications of somatic genome modification are progressing towards clinical introduction and several recent studies have reported on germline genome modification. This has incited a debate on ethical and legal implications and acceptability. There is a growing plea to involve the general public earlier on in the developmental process of science and (bio)technology including genome modification.

STUDY DESIGN SIZE DURATION

In April 2016, a cross-sectional survey was launched online among the Dutch general public. A documentary on genome modification on public television and calls in social media invited viewers and non-viewers, respectively, to participate.

PARTICIPANTS/MATERIALS SETTING METHODS

The questionnaire introduced five potential future applications of genome modification: modified wheat for individuals with gluten intolerance; somatic modification for individuals with neuromuscular diseases; germline modification to prevent passing on a neuromuscular disease; germline modification to introduce resistance to HIV; and germline modification to increase intelligence. Participants were asked to indicate whether and why they would make use of genome modification in these scenarios. The reasons mentioned were analysed through content analysis by two researchers independently. The proportion of respondents that was willing to modify was described per scenario and associations with respondent characteristics were analysed.

MAIN RESULTS AND THE ROLE OF CHANCE

The survey was completed by 1013 participants. Forty-three reasons for being in favour, 45 reasons for being against as well as 26 conditional reasons for the use of genome modification were identified. These could be categorized into 14 domains: safety of the individuals concerned; effectiveness; quality of life of the individuals concerned; existence of a clinical need or an alternative; biodiversity and ecosystems; animal homo sapiens (i.e. relating to effects on humans as a species); human life and dignity; trust in regulation; justice; costs; slippery slope; argument of nature; parental rights and duties; and (reproductive) autonomy. Participants' willingness to use genome modification was dependent on the application: most participants would eat modified wheat if gluten intolerant (74%), would use genome modification to cure his/her own neuromuscular disease (85%) and would apply germline modification to prevent passing on this neuromuscular disease (66%). A minority would apply germline modification to introduce resistance to HIV (30%) or increase intelligence (16%). Being young (odds ratio (OR) = 0.98 per year increase), being male (OR = 2.38), and having watched the documentary (OR = 1.82) were associated with being willing to apply genome modification in more scenarios.

LIMITATIONS REASONS FOR CAUTION

Inquiring for reasons through open questions in a survey allowed for a larger sample size and intuitive responses but resulted in less depth than traditional face-to-face interviews. As the survey was disseminated through social media, the sample is not representative of the overall Dutch population, and hence the quantitative results should not be interpreted as such.

WIDER IMPLICATIONS OF THE FINDINGS

Further public consultation and a more in-depth ethical and societal debate on principles and conditions for responsible use of (germline) genome modification is required prior to future clinical introduction.

STUDY FUNDING/COMPETING INTERESTS

Funded by the University of Amsterdam and University Medical Centre Utrecht. No conflict of interest.

TRIAL REGISTRATION NUMBER

Not applicable.

Authors+Show Affiliations

Department of Bioethics, Clinical Center, National Institutes of Health, USA. Center for Reproductive Medicine, Department of Obstetrics and Gynecology, Academic Medical Center, University of Amsterdam, Amsterdam, The Netherlands.Julius Centre, Medical Humanities, University Medical Center Utrecht/Utrecht University Utrecht, The Netherlands. Department of Genetics, University Medical Centre Utrecht, Utrecht, The Netherlands.Julius Centre, Medical Humanities, University Medical Center Utrecht/Utrecht University Utrecht, The Netherlands.Center for Reproductive Medicine, Department of Obstetrics and Gynecology, Academic Medical Center, University of Amsterdam, Amsterdam, The Netherlands.

Pub Type(s)

Journal Article

Language

eng

PubMed ID

30895249

Citation

Hendriks, S, et al. "Reasons for Being in Favour of or Against Genome Modification: a Survey of the Dutch General Public." Human Reproduction Open, vol. 2018, no. 3, 2018, pp. hoy008.
Hendriks S, Giesbertz NAA, Bredenoord AL, et al. Reasons for being in favour of or against genome modification: a survey of the Dutch general public. Hum Reprod Open. 2018;2018(3):hoy008.
Hendriks, S., Giesbertz, N. A. A., Bredenoord, A. L., & Repping, S. (2018). Reasons for being in favour of or against genome modification: a survey of the Dutch general public. Human Reproduction Open, 2018(3), pp. hoy008. doi:10.1093/hropen/hoy008.
Hendriks S, et al. Reasons for Being in Favour of or Against Genome Modification: a Survey of the Dutch General Public. Hum Reprod Open. 2018;2018(3):hoy008. PubMed PMID: 30895249.
* Article titles in AMA citation format should be in sentence-case
TY - JOUR T1 - Reasons for being in favour of or against genome modification: a survey of the Dutch general public. AU - Hendriks,S, AU - Giesbertz,N A A, AU - Bredenoord,A L, AU - Repping,S, Y1 - 2018/05/16/ PY - 2017/11/03/received PY - 2018/03/21/revised PY - 2018/05/05/accepted PY - 2019/3/22/entrez PY - 2019/3/22/pubmed PY - 2019/3/22/medline KW - CRISPR-Cas systems KW - ethics KW - genetic engineering KW - genome, human KW - germ cells KW - healthcare quality, access and evaluation KW - humans KW - mutation KW - reproductive techniques KW - surveys and questionnaires SP - hoy008 EP - hoy008 JF - Human reproduction open JO - Hum Reprod Open VL - 2018 IS - 3 N2 - STUDY QUESTION: What are the general public's reasons for being in favour of or against the use of genome modification for five potential applications? SUMMARY ANSWER: Overall, 43 reasons for being in favour, 45 reasons for being against as well as 26 conditional reasons for the use of genome modification were identified. WHAT IS KNOWN ALREADY: Various applications of somatic genome modification are progressing towards clinical introduction and several recent studies have reported on germline genome modification. This has incited a debate on ethical and legal implications and acceptability. There is a growing plea to involve the general public earlier on in the developmental process of science and (bio)technology including genome modification. STUDY DESIGN SIZE DURATION: In April 2016, a cross-sectional survey was launched online among the Dutch general public. A documentary on genome modification on public television and calls in social media invited viewers and non-viewers, respectively, to participate. PARTICIPANTS/MATERIALS SETTING METHODS: The questionnaire introduced five potential future applications of genome modification: modified wheat for individuals with gluten intolerance; somatic modification for individuals with neuromuscular diseases; germline modification to prevent passing on a neuromuscular disease; germline modification to introduce resistance to HIV; and germline modification to increase intelligence. Participants were asked to indicate whether and why they would make use of genome modification in these scenarios. The reasons mentioned were analysed through content analysis by two researchers independently. The proportion of respondents that was willing to modify was described per scenario and associations with respondent characteristics were analysed. MAIN RESULTS AND THE ROLE OF CHANCE: The survey was completed by 1013 participants. Forty-three reasons for being in favour, 45 reasons for being against as well as 26 conditional reasons for the use of genome modification were identified. These could be categorized into 14 domains: safety of the individuals concerned; effectiveness; quality of life of the individuals concerned; existence of a clinical need or an alternative; biodiversity and ecosystems; animal homo sapiens (i.e. relating to effects on humans as a species); human life and dignity; trust in regulation; justice; costs; slippery slope; argument of nature; parental rights and duties; and (reproductive) autonomy. Participants' willingness to use genome modification was dependent on the application: most participants would eat modified wheat if gluten intolerant (74%), would use genome modification to cure his/her own neuromuscular disease (85%) and would apply germline modification to prevent passing on this neuromuscular disease (66%). A minority would apply germline modification to introduce resistance to HIV (30%) or increase intelligence (16%). Being young (odds ratio (OR) = 0.98 per year increase), being male (OR = 2.38), and having watched the documentary (OR = 1.82) were associated with being willing to apply genome modification in more scenarios. LIMITATIONS REASONS FOR CAUTION: Inquiring for reasons through open questions in a survey allowed for a larger sample size and intuitive responses but resulted in less depth than traditional face-to-face interviews. As the survey was disseminated through social media, the sample is not representative of the overall Dutch population, and hence the quantitative results should not be interpreted as such. WIDER IMPLICATIONS OF THE FINDINGS: Further public consultation and a more in-depth ethical and societal debate on principles and conditions for responsible use of (germline) genome modification is required prior to future clinical introduction. STUDY FUNDING/COMPETING INTERESTS: Funded by the University of Amsterdam and University Medical Centre Utrecht. No conflict of interest. TRIAL REGISTRATION NUMBER: Not applicable. SN - 2399-3529 UR - https://www.unboundmedicine.com/medline/citation/30895249/Reasons_for_being_in_favour_of_or_against_genome_modification:_a_survey_of_the_Dutch_general_public_ L2 - https://www.ncbi.nlm.nih.gov/pmc/articles/pmid/30895249/ DB - PRIME DP - Unbound Medicine ER -