Are Good Intentions Good Enough?: Informed Consent Without Trained Interpreters

Original Article



To examine the informed consent process when trained language interpreters are unavailable.


Ensuring sufficient patient understanding for informed consent is especially challenging for patients with Limited English Proficiency (LEP). While US law requires provision of competent translation for LEP patients, such services are commonly unavailable.

Design and Participants

Qualitative data was collected in 8 prenatal genetics clinics in Texas, including interviews and observations with 16 clinicians, and 30 Latina patients. Using content analysis techniques, we examined whether the basic criteria for informed consent (voluntariness, discussion of alternatives, adequate information, and competence) were evident for each of these patients, contrasting LEP patients with patients not needing an interpreter. We present case examples of difficulties related to each of these criteria, and compare informed consent scores for consultations requiring interpretation and those which did not.


We describe multiple communication problems related to the use of untrained interpreters, or reliance on clinicians’ own limited Spanish. These LEP patients appear to be consistently disadvantaged in each of the criteria we examined, and informed consent scores were notably lower for consultations which occurred across a language barrier.


In the absence of adequate Spanish interpretation, it was uncertain whether these LEP patients were provided the quality and content of information needed to assure that they are genuinely informed. We offer some low-cost practice suggestions that might mitigate these problems, and improve the quality of language interpretation, which is essential to assuring informed choice in health care for LEP patients.


informed consent language barriers genetic counseling Latinas 



This research was supported by the NIH National Center for Human Genome Research (1RO1 HG001384-01). The research was also supported by a grant from the San Antonio Area Foundation. We wish to thank the staff and patients whose kind cooperation made this research possible. Emily Bergstrom, Heide Castañeda, Heidi Connealy, and Aaron Whiteford provided invaluable help with a variety of data analysis and literature review tasks. We also wish to thank Carole H. Browner and Mabel Preloran for their integral involvement and thoughtful insights throughout all phases of the project.

Conflict of interest

None disclosed.


  1. 1.
    Laine C, Davidoff F. Patient-centered medicine. A professional evolution. JAMA. 1996;275(2):152–6.PubMedCrossRefGoogle Scholar
  2. 2.
    Marini TS. Decisions about amniocentesis by advanced maternal age patients following maternal serum screening may not always correlate clinically with screening results: need for improvement in informed consent process. Am J Med Genet. 2002;109(3):171–5.PubMedCrossRefGoogle Scholar
  3. 3.
    Quill TE, Brody H. Physician recommendations and patient autonomy: finding a balance between physician power and patient choice. Ann Intern Med. 1996;125(9):763–9.PubMedGoogle Scholar
  4. 4.
    Rapp R. Chromosomes and communication: the discourse of genetic counseling. Med Anthropol Q. 1988;2(2):143–57.CrossRefGoogle Scholar
  5. 5.
    Dunne C, Warren C. Lethal autonomy: the malfunction of the informed consent mechanism within the context of prenatal diagnosis of genetic variants. Issues Law Med. 1998;14(2):165–203.PubMedGoogle Scholar
  6. 6.
    Emery J. Is informed choice in genetic testing a different breed of informed decision-making? A discussion paper. Health Expect. 2001;4:81–6.PubMedCrossRefGoogle Scholar
  7. 7.
    Freda MC, DeVore N, Valentine-Adams N, Bombard A, Merkatz IR. Informed consent for maternal serum alpha-fetoprotein screening in an inner city population: how informed is it? J Obstet Gynecol Neonatal Nurs. 1998;27(1):99–106.PubMedCrossRefGoogle Scholar
  8. 8.
    US Census Bureau. QT-02. Profile of Selected Social Characteristics: 2000. US Census Bureau, US Department of Commerce 2001 [cited 2001 Nov. 21]. Available from:
  9. 9.
    Office for Civil Rights. Policy Guidance - Title VI Prohibition Against National Origin Discrimination as it Affects Persons with Limited English Proficiency. Office for Civil Rights, U S Department of Health and Human Services 2002 [cited 2002 June 19]. Available from:
  10. 10.
    Fortier JP, Strobel C, Aguilera E. Language barriers to health care: federal and state initiatives, 1990–1995. J Health Care Poor Underserved. 1998;9(suppl):S81–100.Google Scholar
  11. 11.
    Hawryluk M. AMA: Doctors shouldn’t pay for translators. Interpreters’ fees often exceed Medicaid payments for office visits. American Medical Association 2002. Available from:
  12. 12.
    Keers-Sanchez A. Mandatory provision of foreign language interpreters in health care services. J Leg Med. 2003;24(4):557–78.PubMedCrossRefGoogle Scholar
  13. 13.
    Perkins J, Vera Y. Legal protections to ensure linguistically appropriate health care. J Health Care Poor Underserved. 1998;9(suppl):S62–80.Google Scholar
  14. 14.
    US Department of Health and Human Services. Guidance to Federal Financial Assistance Recipients Regarding Title VI Prohibition Against National Origin Discrimination Affecting Limited English Proficient Persons. 8-4-2003. HHS Office for Civil Rights.Google Scholar
  15. 15.
    NCIHC. National Standards of Practice for Interpreters in Health Care. National Council on Interpreting in Health Care 2005. Available from:
  16. 16.
    Flores G. The impact of medical interpreter services on the quality of health care: a systematic review. Med Care Res Rev. 2005;62(3):255–99.PubMedCrossRefGoogle Scholar
  17. 17.
    Betancourt JR, Jacobs EA. Language barriers to informed consent and confidentialitiy: the impact on women’s health. J Am Med Womens Assoc. 2000;55(5):294–5.PubMedGoogle Scholar
  18. 18.
    Carter-Pokras O, O’Neill MJ, Cheanvechai V, Menis M, Fan T, Solera A. Providing linguistically appropriate services to persons with limited English proficiency: a needs and resources investigation. Am J Manag Care. 2004;10 Spec No:SP29–36.Google Scholar
  19. 19.
    John-Baptiste A, Naglie G, Tomlinson G, et al. The effect of English language proficiency on length of stay and in-hospital mortality. J Gen Intern Med. 2004;19(3):221–8.PubMedCrossRefGoogle Scholar
  20. 20.
    Riddick S. Improving access for limited English-speaking consumers: a review of strategies in health care settings. J Health Care Poor Underserved. 1998;9(suppl):S40–61.Google Scholar
  21. 21.
    Roberts CM. Meeting the needs of patients with limited English proficiency. J Med Pract Manage. 2001;17(2):71–5.PubMedGoogle Scholar
  22. 22.
    Wilson E, Chen AH, Grumbach K, Wang F, Fernandez A. Effects of limited English proficiency and physician language on health care comprehension. J Gen Intern Med. 2005;20(9):800–6.PubMedCrossRefGoogle Scholar
  23. 23.
    Woloshin S, Bickell NA, Schwartz LM, Gany F, Welch HG. Language barriers in medicine in the United States. JAMA. 1995;273(9):724–8.PubMedCrossRefGoogle Scholar
  24. 24.
    Woloshin S, Schwartz LM, Katz SJ, Welch HG. Is language a barrier to the use of preventive services? J Gen Intern Med. 1997;12(8):472–7.PubMedCrossRefGoogle Scholar
  25. 25.
    Burgess MM. Beyond consent: ethical and social issues in genetic testing. Nat Rev Genet. 2001;2(2):147–51.PubMedCrossRefGoogle Scholar
  26. 26.
    Jacobson GM, Veach PM, LeRoy BS. A survey of genetic counselors’ use of informed consent documents for prenatal genetic counseling sessions. J Genet Couns. 2001;10(1):3–24.PubMedCrossRefGoogle Scholar
  27. 27.
    Beauchamp TL, Childress JF. Principles of Biomedical Ethics, 4th ed. New York: Oxford University Press; 1994.Google Scholar
  28. 28.
    Braddock CH III, Edwards KA, Hasenberg NM, Laidley TL, Levinson W. Informed decision making in outpatient practice: time to get back to basics. JAMA. 1999;282(24):2313–20.PubMedCrossRefGoogle Scholar
  29. 29.
    Headings VE. Revisiting foundations of autonomy and beneficence in genetic counseling. Genet Couns. 1997;8(4):291–4.PubMedGoogle Scholar
  30. 30.
    Barnes DM, Davis AJ, Moran T, Portillo CJ, Koenig BA. Informed consent in a multicultural cancer patient population: implications for nursing practice. Nursing Ethics 1998;5(5):412–23.PubMedGoogle Scholar
  31. 31.
    Flores G, Abreu M, Schwartz I, Hill M. The importance of language and culture in pediatric care: case studies from the Latino community. J Pediatr. 2000;137(6):842–8.PubMedCrossRefGoogle Scholar
  32. 32.
    McCabe M, Morgan F, Curley H, Begay R, Gohdes DM. The informed consent process in a cross-cultural setting: is the process achieving the intended result? Ethn Dis. 2005;15(2):300–4.PubMedGoogle Scholar
  33. 33.
    Simon C, Zyzanski SJ, Eder M, Raiz P, Kodish ED, Siminoff LA. Groups potentially at risk for making poorly informed decisions about entry into clinical trials for childhood cancer. J Clin Oncol. 2003;21(11):2173–8.PubMedCrossRefGoogle Scholar
  34. 34.
    Huibers AK, van ’t Spijker A. The autonomy paradox: predictive genetic testing and autonomy: three essential problems. Patient Educ Couns. 1998;35:53–62.PubMedCrossRefGoogle Scholar
  35. 35.
    Kuller JA, Laifer SA. Contemporary approaches to prenatal diagnosis. Am Fam Physician. 1995;52(8):2277–6.Google Scholar
  36. 36.
    Kaufert JM, Putsch RW. Communication through interpreters in healthcare: ethical dilemmas arising from differences in class, culture, language, and power. J Clin Ethics. 1997;8(1):71–87.PubMedGoogle Scholar
  37. 37.
    Hunt LM, de Voogd KB. Autonomy, danger, and choice: the moral imperative of an “at risk” pregnancy for a group of low income Latinas in Texas. In: Harthorn BH, Oaks L, eds. Risk, Culture, & Health Inequality: Shifting Perceptions of Danger and Blame. Greenwood Press: 2003:74–103.Google Scholar
  38. 38.
    Hunt LM, de Voogd KB, Castañeda H. The routine and the traumatic in prenatal genetic diagnosis: does clinical information inform patient decision-making? Patient Educ Couns. 2005;56:302–12.PubMedCrossRefGoogle Scholar
  39. 39.
    Browner CH, Preloran HM, Casado MC, Bass HN, Walker AP. Genetic counseling gone awry: miscommunication between prenatal genetic service providers and Mexican-origin clients. Soc Sci Med. 2003;56:1933–46.PubMedCrossRefGoogle Scholar
  40. 40.
    Miles M, Huberman AM. Qualitative Data Analysis: An Expanded Source Book. 2nd ed. Sage Publications; 1994.Google Scholar
  41. 41.
    Bernard HR. Research Methods in Anthropology. 2nd ed. Thousand Oaks, CA: Sage Publishers; 1994.Google Scholar
  42. 42.
    Dailey JV, Pagnotto MA, Fontana-Bitton S, Brewster SJ. Role of the genetic counselor: an overview. J Perinat Neonatal Nurs. 1995;9(3):32–44.PubMedGoogle Scholar
  43. 43.
    Wertz DC, Gregg R. Genetics services in a social, ethical and policy context: a collaboration between consumers and providers. J Med Ethics. 2000;26(4):261–5.PubMedCrossRefGoogle Scholar
  44. 44.
    Hunt LM, de Voogd KB. Clinical myths of the cultural “other”: implications for Latino patient care. Acad Med. 2005;80(10):918–24.PubMedCrossRefGoogle Scholar
  45. 45.
    Levine RJ. Ethics and Regulation of Clinic Research. New Haven: Yale University Press; 1986.Google Scholar
  46. 46.
    NSGC. Code of Ethics. National Society of Genetic Counselors 2006 [cited 2006 July 7]. Available from:
  47. 47.
    McQueen MJ. Some ethical and design challenges of screening programs and screening tests. Clin Chim Acta. 2002;315(a):41–8.PubMedCrossRefGoogle Scholar
  48. 48.
    Browner CH, Preloran HM, Cox SJ. Ethnicity, bioethics, and prenatal diagnosis: the amniocentesis decisions of Mexican-origin women and their partners. Am J Public Health. 1999;89(11):1658–66.PubMedCrossRefGoogle Scholar
  49. 49.
    Kenen RH. The at-risk health status and technology: a diagnostic invitation and the ‘gift’ of knowing. Soc Sci Med. 1996;42(11):1545–53.PubMedCrossRefGoogle Scholar
  50. 50.
    Hunt LM, de Voogd KB. Do notions of risk inform patient choice? Lessons from a study of prenatal genetic counseling. Med Anthropol. 2006;25:1–27.CrossRefGoogle Scholar
  51. 51.
    Baillie C, Smith J, Hewison J, Mason G. Ultrasound screening for chromosomal abnormality: women’s reactions to false positive results. Br J Health Psychol. 2005;5(4):377–94.CrossRefGoogle Scholar
  52. 52.
    Filkins K, Koos BJ. Ultrasound and fetal diagnosis. Curr Opin Obstet Gynecol. 2005;17(2):185–95.PubMedCrossRefGoogle Scholar
  53. 53.
    Office for Civil Rights. OCR Fact Sheet—Language Assistance to Persons with Limited English Proficiency (LEP). Office for Civil Rights, US Department of Health and Human Services 2000 [cited 2001 Nov. 6]. Available from:
  54. 54.
    Chen A. Doctoring across the language divide. Health Aff. 2006;25(3):808–13.CrossRefGoogle Scholar
  55. 55.
    Zabar S, Hanley K, Kachur E, et al. “Oh! She doesn’t speak English!” Assessing resident competence in managing linguistic and cultural barriers. J Gen Intern Med. 2006;21(5):510–3.PubMedCrossRefGoogle Scholar
  56. 56.
    Karliner LS, Perez-Stable EJ, Gildengorin G. The language divide. The importance of training in the use of interpreters for outpatient practice. J Gen Intern Med. 2004;19(2):175–83.PubMedCrossRefGoogle Scholar
  57. 57.
    Bender DE, Clawson M, Harlan C, Lopez R. Improving access for Latino immigrants: evaluation of language training adapted to the needs of health professionals. J Immigr Health. 2004;6(4):197–209.PubMedCrossRefGoogle Scholar
  58. 58.
    Sherrill W, Crew L, Mayo RB, Mayo WF, Rogers BL, Haynes DF. Educational and health services innovation to improve care for rural Hispanic communities in the USA. Rural Remote Health. 2005;5(4):402.PubMedGoogle Scholar
  59. 59.
    Ponce NA, Hays RD, Cunningham WE. Linguistic disparities in health care access and health status among older adults. J Gen Intern Med. 2006;21(7):786–91.PubMedCrossRefGoogle Scholar

Copyright information

© Society of General Internal Medicine 2007

Authors and Affiliations

  1. 1.Department of AnthropologyMichigan State UniversityEast LansingUSA
  2. 2.Center for Ethics and Humanities in the Life SciencesMichigan State UniversityEast LansingUSA
  3. 3.Department of Family and Community MedicineUniversity of Texas Health Science CenterSan AntonioUSA

Personalised recommendations