Journal of Community Genetics

, Volume 6, Issue 3, pp 301–311 | Cite as

Challenges for providing genetic counselling in Colombian genetic clinics: the viewpoint of the physicians providing genetic consultations

  • Clemencia Rodas-Pérez
  • Angus Clarke
  • John Powell
  • Margaret Thorogood
Original Article

Abstract

This study explores the provision of clinical genetic services in Colombia, in order to promote improvements in these services. We carried out semi-structured interviews with 20 doctors working in genetic clinics, and we report the challenges in providing genetic counselling that they have identified. Education and training in genetics in Colombian medical schools were described as inadequate, and interviewees found that many of their medical colleagues knew too little to be able to refer appropriately to a genetics service. The doctors interviewed recognised their own limitations, including lack of knowledge, absence of training in communication skills and the strong influence of religious beliefs on the consultations of some colleagues. There may also be communication problems during the consultation: patients may fail to understand the explanations given or to accept the incurable nature of genetic conditions. There are also problems with access, because genetic services are not covered by the health insurance system in Colombia. More training in genetics is required at medical schools in Colombia, at the undergraduate and postgraduate level. There was a consensus that most medical specialities are limited in their knowledge, awareness and understanding of genetics. Furthermore, many medical geneticists did not believe that other health professionals should work as genetic counsellors. These findings may assist in the development of improved genetic counselling services in Colombia and in the establishment of an enhanced academic curriculum of basic and clinical genetics at Colombian universities.

Keywords

Colombia Genetic counselling Doctors’ views 

References

  1. AGNC Supervision Working Group, Clarke A, Middleton A, Cowley L, Guilbert P, Macleod R, Clarke AJ, Tran V (2007) Report from the UK and Eire association of genetic nurses and counsellor (AGNC) supervision working group on genetic counselling supervision. J Genet Couns 16:127–142CrossRefGoogle Scholar
  2. Alwan A, Modell B (2003) Recommendations for introducing genetics services in developing countries. Nat Rev Genet 4:61–68PubMedCrossRefGoogle Scholar
  3. Andrews L (2001) Future perfect confronting decisions about genetics. Columbia University Press, New YorkGoogle Scholar
  4. Burke W, Atkins D (2002) Genetic test evaluation: information needs of clinicians, policy makers, and the public. Am J Epidemiol 156:311–318PubMedCrossRefGoogle Scholar
  5. Chapple A, Campion P, May C (1997) Clinical terminology: confusion amongst families undergoing genetic counseling. Patient Educ Couns 32:81–91PubMedCrossRefGoogle Scholar
  6. Cordier C, Lambert D, Voelckel MA, Hosterey-Ugander U, Skirton H (2012) A profile of the genetic counsellor and genetic nurse profession in European countries. J Community Genet 3:19–24PubMedCentralPubMedCrossRefGoogle Scholar
  7. Elliott BA, Hein HA (1978) Neonatal death: reflections for physicians. Pediatrics 62:96–100PubMedGoogle Scholar
  8. Emery J, Hayflick S (2001) The challenge of integrating genetic medicine into primary care. Br Med J 322:1027–1030CrossRefGoogle Scholar
  9. Fears R, Weatherall D (1999) The impact of genetics on medical education and training. Br Med Bull 55:460–470PubMedCrossRefGoogle Scholar
  10. Federación Colombiana de Enfermedades Raras (FECOER) (2012). www.fecoer.org/nuevo-decreto-reglamentario-de-la-ley-1392-censo-de-pacientes-con-enfermedades-raquiaras. Accessed 30 Mar 2015
  11. Feero WG, Green ED (2011) Genomics education for health care professionals in the 21st century. JAMA 396:989–990Google Scholar
  12. Ferguson WJ, Candib LM (2002) Culture, language, and the doctor–patient relationship. Fam Med Commun Health 34:353–361Google Scholar
  13. Finkler K, Skrzynia C, Evans JP (2003) The new genetics and its consequences for family, kinship, medicine and medical genetics. Soc Sci Med 57:403–412PubMedCrossRefGoogle Scholar
  14. Giraldo A (2004) Genetic services in Colombia. Community Genet 7:126–129PubMedCrossRefGoogle Scholar
  15. Goffman E (1956) The nature of deference and demeanor. Am Anthropol 58(3):473–502CrossRefGoogle Scholar
  16. González-Vélez AC (2005) Current situation with abortion in Colombia: between illegality and reality. Cad Saude Publ 21:624–628CrossRefGoogle Scholar
  17. Green J, Thorogood N (2004) Qualitative methods for health research. Thousand Oaks, LondonGoogle Scholar
  18. Greendale K, Pyeritz RE (2001) Empowering primary care health professionals in medical genetics: how soon? How fast? How far? Am J Med Genet 106:223–232PubMedCrossRefGoogle Scholar
  19. Harper PS (2010) Practical genetic counselling. Edward Arnold, LondonGoogle Scholar
  20. Henneman L, Marteau TM, Timmermans DRM (2008) Clinical geneticists’ and genetic counselors’ views on the education risks: a qualitative study. Patient Educ Couns 73:42–49PubMedCrossRefGoogle Scholar
  21. Kirklin D (2003) Responding to the implications of the genetic revolution for the education and training of doctors: a medical humanities approach. Med Educ 37:168–173PubMedCrossRefGoogle Scholar
  22. Kroese M, Elles R, Zimmern R (2007) The evaluation of clinical validity and clinical utility of genetic tests. www.phgfoundation.org/file/3932/. Accessed 12 Dec 2014
  23. Kurtz S, Silverman J, Benson J, Draper J (2003) Marrying content and process in clinical method teaching: enhancing the Calgary-Cambridge guides. Acad Med 78:802–809PubMedCrossRefGoogle Scholar
  24. Kyne G, Maxwell S, Brameld K, Harrison K, Goldblatt J, O’Leary P (2011) Compliance with professional guidelines with reference to familial cancer services. Aust N Z J Public Health 35:226–230PubMedCrossRefGoogle Scholar
  25. Lantigua A, Lemus MT, Marcheco B (2007) Medical genetic services in Cuba. Rev Cuba Genet Comunitaria 1:4–6Google Scholar
  26. Maniolo TA (2013) Implementing genomic medicine in the clinic: the future is here. Genet Med 15:258–267CrossRefGoogle Scholar
  27. Marcheco B (2009) Cuba’s national medical genetics program. MEDICC Rev 11:11–13PubMedGoogle Scholar
  28. Mathews JJ (1983) The communication process in clinical settings. Soc Sci Med 17:1371–1378PubMedCrossRefGoogle Scholar
  29. McCahon D, Holder R, Metcalfe S, Clifford P, Cole T, Sleightholme HV, Wilson S (2009) General practitioners’ attitudes to assessment of genetic risk of common disorders in routine primary care. Clin Genet 76:544–551PubMedCrossRefGoogle Scholar
  30. Michie S, Smith JA, Heaversedge J, Read S (1999) Genetic counselling: clinical geneticists’ views. J Genet Couns 8:275–287PubMedCrossRefGoogle Scholar
  31. Middleton A (2005) Tailoring genetic information and services to clients’ culture, knowledge and language level. Nurs Stand 20:52–56PubMedCrossRefGoogle Scholar
  32. Middleton A, Wiggins J (2013) Getting the message across: communication with diverse populations in clinical genetics. Oxford University Press, OxfordGoogle Scholar
  33. NHS National Genetics and Genomics Education Centre (2014). www.geneticseducation.nhs.uk. Accessed 13 Apr 2014
  34. Novoa MC, Burnham TF (2011) Challenges for the universalization of clinical genetics: the Brazilian case. Rev Panam Salud Publ [Pan Am J Public Health] 29:61–68CrossRefGoogle Scholar
  35. Ormond K, Gill C, Semik P, Kirschner KL (2003) Attitudes of health care trainees about genetics and disability: issues of access, health care communication, and decision-making. J Genet Couns 12:333–349PubMedCrossRefGoogle Scholar
  36. Oyama O, Koening HG (1998) Religious beliefs and practices in family medicine. Arch Fam Med 7:431–435PubMedCrossRefGoogle Scholar
  37. Parker LS (1994) Bioethics for human geneticists: models for reasoning and methods for teaching. Am J Hum Genet 54:137–147PubMedCentralPubMedGoogle Scholar
  38. Parsons E, Atkinson P (1993) Genetic risk and reproduction. Sociol Rev 41:679–706PubMedCrossRefGoogle Scholar
  39. Penchaszadeh V (2002) Medical genetic services in Latin America. Rev Panam Salud Públ [Panam J Public Health] 3:409–420Google Scholar
  40. Penchaszadeh V (2004) Genetic services in Latin America. Community Genet 7:65–69PubMedCrossRefGoogle Scholar
  41. PHG Foundation (2011a) Genetics and Mainstream Medicine. www.phgfoundation.org/reports/7965/. Accessed 3 May 2014
  42. PHG Foundation (2011b) Next steps in the sequence; the implications of whole genome sequencing for health in the UK. www.phgfoundation.org/file/10363/. Accessed 3 May 2014
  43. Rose P, Lucassen A (1999) Practical genetics for primary care. Oxford University Press, OxfordGoogle Scholar
  44. Rubinstein WS (2008) Roles and responsibilities of a medical geneticist. Fam Cancer 7:5–14PubMedCrossRefGoogle Scholar
  45. Silverman D (2001) Interpreting qualitative data: methods for analysis talk, text and interaction. Sage, LondonGoogle Scholar
  46. Skirton H, Barnes C, Guilbert P, Kershaw A, Kerzin-Storrar L, Patch C, Curtis G, Walford-Moore J (1998) Recommendations for education and training of genetic nurses and counsellors in the United Kingdom. J Med Genet 35:410–412PubMedCentralPubMedCrossRefGoogle Scholar
  47. Skirton H, Patch C, Williams J (2005) Applied genetics in healthcare. A handbook for specialist practitioners. New York: Taylor & Francis GroupGoogle Scholar
  48. Skirton H, Lewis C, Kent A, Coviello DA (2010) Genetic education and the challenge of genomic medicine: development of core competencies to support preparation of health professionals in Europe. Eur J Human Genet 18:972–977CrossRefGoogle Scholar
  49. Snelgrove S, Hughes D (2000) Interprofessional relationships between doctors and nurses: perspectives from South Wales. J Adv Nurs 31:661–667PubMedCrossRefGoogle Scholar
  50. Stewart MA (1995) Effective physician-patient communication and health outcomes: a review. Can Med Assoc J 152:1423–1433Google Scholar
  51. Tabor HK, Berkman BE, Hull SC, Bamshad MJ (2011) Genomics really gets personal: how exome and whole genome sequencing challenge the ethical framework of human genetics research. Am J Med Genet 155A:2916–2924PubMedCrossRefGoogle Scholar
  52. van Langen IM, Birnie E, Leschot NJ, Bonsel GJ, Wilde AAM (2003) Genetic knowledge and counselling skills of Dutch cardiologists: sufficient for the genomics era? Eur Heart J 24:560–566PubMedCrossRefGoogle Scholar
  53. Watson E, Shickle D, Qureshi N, Emery J, Austoker J (1999) ‘The new genetics’ and primary care: GPs’ views on their role and their educational needs. Fam Pract 16:420–425PubMedCrossRefGoogle Scholar
  54. Weil J (2000) Psychosocial genetic counselling. Oxford University Press, OxfordGoogle Scholar
  55. Weil J (2003) Psychosocial genetic counseling in the post-nondirective era: a point of view. J Genet Couns 12:199–211PubMedCrossRefGoogle Scholar
  56. WHO, World Health Organisation (2006) World Health Report. www.who.int/whr/2006/en/. Accessed 30 June 2009
  57. WHO, World Health Organisation (2011) World Health Report. The world medicines situation report. www.who.int/medicines/areas/policy/world…/en/index.html. Accessed 22 Sep 2012

Copyright information

© Springer-Verlag Berlin Heidelberg 2015

Authors and Affiliations

  • Clemencia Rodas-Pérez
    • 1
  • Angus Clarke
    • 2
  • John Powell
    • 3
  • Margaret Thorogood
    • 1
  1. 1.University of WarwickCoventryUK
  2. 2.Cardiff UniversityCardiffUK
  3. 3.University of OxfordOxfordUK

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