Advertisement

Irish Journal of Medical Science (1971 -)

, Volume 185, Issue 4, pp 825–831 | Cite as

A qualitative analysis of the attitudes of Irish patients towards participation in genetic-based research

  • T. P. McVeigh
  • K. J. Sweeney
  • M. J. Kerin
  • D. J. Gallagher
Original Article

Abstract

Background

Progress in diagnostic and therapeutic strategies in medicine is dependent upon high-quality biomedical research. Technological advances have facilitated improved understanding of disease aetiology, and rapidly emerging data promises further progress. Translating this potential into the clinic depends on patient participation in innovative clinical trials. We investigated attitudes to genetic research in Ireland, particularly with respect to commercial and financial implications.

Methods

A multi-centre, cross-sectional survey study was performed. Consecutive out-patients attending four clinics were asked to complete paper-based questionnaires. The same questionnaire was publicly available in electronic format on www.surveymonkey.com for 72 h. Data were analysed using SPSS.

Results

351 questionnaires were completed (99 paper, 252 electronic). The majority of respondents were female (n = 288, 82 %), and highly educated, with 244 (70 %) attending college/university. Most participants supported genetic research (267, 76 %), more frequently for common diseases (274, 78 %) than rare disorders (204, 58 %, p < 0.001, χ 2). 103 (29 %) had participated in scientific research, and 57 (16 %) had donated material to a bio-bank. The majority (n = 213, 61 %) would not support research with potential financial/commercial gain. 106 (30 %) would decline to participate in research if researchers would benefit financially, compared to 49 (14 %) if the research was supported by a pharmaceutical company (p < 0.001, χ 2). Respondents would provide buccal samples (258, 74 %) more readily than tissue (225, 64 %) or blood (222, 63 %).

Conclusions

A high level of support for genetic research exists among the Irish population, but active participation is dependent upon a number of factors, notably, type of biological material required, frequency of the disease in question, and commercial interest of the researchers.

Keywords

Genetic research Biomedical research Biobank Biological specimen Data protection 

Notes

Compliance with ethical standards

Funding

This study was funded by Breast Cancer Research (Chy 9997) and the HSE/HRB National Academic SpR Research Fellowship.

Conflict of interest

The authors have no conflicts of interest to declare.

Ethical approval

All procedures performed in studies involving human participants were in accordance with the ethical standards of the institutional and/or national research committee and with the 1964 Helsinki Declaration and its later amendments or comparable ethical standards. Ethical approval for the study was granted by Research Ethics Committees in the Mater Misericordiae and Galway University Hospitals.

Informed consent

Informed consent was obtained from all individual participants included in the study.

References

  1. 1.
    Moore GE (1965) Cramming more components onto integrated circuits. Electronics 38(8):114–117Google Scholar
  2. 2.
    National Human Genome Research Institute. http://www.genome.gov/sequencingcosts/
  3. 3.
    Rabbani B, Mahdieh N, Hosomichi K, Nakaoka H, Inoue I (2012) Next-generation sequencing: impact of exome sequencing in characterizing Mendelian disorders. J Hum Genet 57(10):621–632CrossRefPubMedGoogle Scholar
  4. 4.
    Fogh I, Ratti A, Gellera C et al (2014) A genome-wide association meta-analysis identifies a novel locus at 17q11.2 associated with sporadic amyotrophic lateral sclerosis. Hum Mol Genet 23(8):2220–2231CrossRefPubMedGoogle Scholar
  5. 5.
    Gao H, Li N, Rao S et al (2014) Genome-wide linkage scan identifies two novel genetic loci for coronary artery disease: in GeneQuest families. PLoS One 9(12):1–14Google Scholar
  6. 6.
    Litchfield K, Sultana R, Renwick A et al (2015) Multi-stage genome-wide association study identifies new susceptibility locus for testicular germ cell tumour on chromosome 3q25. Hum Mol Genet 24(4):1169–1176CrossRefPubMedGoogle Scholar
  7. 7.
    Medway CW, Abdul-Hay S, Mims T et al (2014) ApoE variant p. V236E is associated with markedly reduced risk of Alzheimer’s disease. Mol Neurodegener 9(1):1–5CrossRefGoogle Scholar
  8. 8.
    Sánchez-Mora C, Ramos-Quiroga JA, Bosch R et al (2015) Case–control genome-wide association study of persistent attention-deficit hyperactivity disorder identifies FBXO33 as a novel susceptibility gene for the disorder. Neuropsychopharmacology 40(4):915–926CrossRefPubMedGoogle Scholar
  9. 9.
    Hong EP, Park JW (2012) Sample size and statistical power calculation in genetic association studies. Genomics Inform 10(2):117–122CrossRefPubMedPubMedCentralGoogle Scholar
  10. 10.
    Royal C, Baffoe-Bonnie A, Kittles R et al (2000) Recruitment experience in the first phase of the African American Hereditary Prostate Cancer (AAHPC) study. Ann Epidemiol 10(8 Suppl):S68–S77CrossRefPubMedGoogle Scholar
  11. 11.
    Audrain J, Tercyak KP, Goldman P, Bush A (2002) Recruiting adolescents into genetic studies of smoking behavior. Cancer Epidemiol Biomark Prev 11(3):249–252Google Scholar
  12. 12.
    Lewis C, Clotworthy M, Hilton S et al (2013) Public views on the donation and use of human biological samples in biomedical research: a mixed methods study. BMJ Open 3(8):e003056CrossRefPubMedPubMedCentralGoogle Scholar
  13. 13.
    Bui ET, Anderson NK, Kassem L, McMahon FJ (2014) Do participants in genome sequencing studies of psychiatric disorders wish to be informed of their results? A survey study. PLoS One 9(7):e101111CrossRefPubMedPubMedCentralGoogle Scholar
  14. 14.
    Yu JH, Harrell TM, Jamal SM, Tabor HK, Bamshad MJ (2014) Attitudes of genetics professionals toward the return of incidental results from exome and whole-genome sequencing. Am J Hum Genet 95(1):77–84CrossRefPubMedPubMedCentralGoogle Scholar
  15. 15.
    Caulfield T, McGuire AL, Cho M et al (2008) Research ethics recommendations for whole-genome research: consensus statement. PLoS Biol 6(3):0430–0435CrossRefGoogle Scholar
  16. 16.
    McGuire AL, Robinson JO, Ramoni RB, Morley DS, Jofe S, Plon SE (2013) Returning genetic research results: study type matters. Personal Med 10(1):27–34CrossRefGoogle Scholar
  17. 17.
    Westbrook MJ, Wright MF, Van Driest SL et al (2013) Mapping the incidentalome: estimating incidental findings generated through clinical pharmacogenomics testing. Genet Med 15(5):325–331CrossRefPubMedGoogle Scholar
  18. 18.
    Bombard Y, Robson M, Offit K (2013) Revealing the incidentalome when targeting the tumor genome. J Am Med Assoc (JAMA) 310(8):795–796CrossRefGoogle Scholar
  19. 19.
    Green RC, Berg JS, Grody WW et al (2013) ACMG recommendations for reporting of incidental findings in clinical exome and genome sequencing. Genet Med 15(7):565–574CrossRefPubMedPubMedCentralGoogle Scholar
  20. 20.
    Fabsitz RR, McGuire A, Sharp RR et al (2010) Ethical and practical guidelines for reporting genetic research results to study participants: updated guidelines from a National Heart, Lung, and Blood Institute working group. Circ Cardiovasc Genet 3(6):574–580CrossRefPubMedPubMedCentralGoogle Scholar
  21. 21.
    Regier DA, Peacock SJ, Pataky R et al (2015) Societal preferences for the return of incidental findings from clinical genomic sequencing: a discrete-choice experiment. CMAJ 187(6):E190–E197CrossRefPubMedPubMedCentralGoogle Scholar
  22. 22.
    Shkedi-Rafid S, Dheensa S, Crawford G, Fenwick A, Lucassen A (2014) Defining and managing incidental findings in genetic and genomic practice. J Med Genet 51(11):715–723CrossRefPubMedGoogle Scholar
  23. 23.
    Netzer C, Klein C, Kohlhase J, Kubisch C (2009) New challenges for informed consent through whole genome array testing. J Med Genet 46(7):495–496CrossRefPubMedGoogle Scholar
  24. 24.
    Newborn Screening Blood Spot Cards, Royal College of Physicians of Ireland Policy Document, September 2013. http://www.rcpi.ie/content/docs/000001/1619_5_media.pdf?1392207018

Copyright information

© Royal Academy of Medicine in Ireland 2015

Authors and Affiliations

  • T. P. McVeigh
    • 1
    • 2
  • K. J. Sweeney
    • 3
  • M. J. Kerin
    • 2
  • D. J. Gallagher
    • 4
    • 5
  1. 1.Department of Clinical GeneticsOur Lady’s Children’s Hospital CrumlinDublin 12Ireland
  2. 2.National University of IrelandGalwayIreland
  3. 3.BreastCheck, Western UnitGalway University HospitalGalwayIreland
  4. 4.Mater Misericordiae University HospitalDublinIreland
  5. 5.St James’ University HospitalDublinIreland

Personalised recommendations