题名

剖析產前遺傳檢測之諮詢與倫理議題

并列篇名

Explore the Ethical Issues in Counseling for Prenatal Genetic Test

DOI

10.30074/FJMH.200503_18(1).0003

作者

蔣欣欣(Hsien-Hsien Chiang);喻永生(Yeong-Seng Yuh);余玉眉(Yu-Mei(Yu) Chao)

关键词

基因科技 ; 產前遺傳諮詢 ; 產前母血唐氏症篩檢 ; 專業關係 ; 互為主體性 ; genetic technology ; prenatal genetic counseling ; maternal serum screening ; professional relationships ; intersubjectivity

期刊名称

中華心理衛生學刊

卷期/出版年月

18卷1期(2005 / 03 / 01)

页次

65 - 86

内容语文

繁體中文

中文摘要

產前遺傳檢測有利於提升唐氏症胎兒的診斷率,但也帶給一些孕婦及其家庭衝擊與兩難的抉擇。本論文旨在探究產前檢測遺傳的諮詢關係與倫理議題。採用參與觀察的方式訪談接受檢測為陽性反應的孕婦、唐氏症兒父母以及產科醫護人員,研究結果指出專業制度與知識體系(知己)、孕婦的生活世界(知彼)、以及互為主體的諮詢關係為三項重要議題。並且進一步討論遺傳檢測帶來生命價值的反省、產前檢測的告知、人本導向的產前遺傳諮詢。

英文摘要

The aim of prenatal testing is to enhance the detection rate for Down's syndrome; however there is a tension between the goals of reproductive choice and the prevention of the birth within a family of a child who would has a disability. The aim of this study was to explore the way of informing clients of prenatal testing and the ethical issues associated with genetic counseling. Using participant observation and in-depth interviews, this study examined the experiences of women who had received positive results for maternal serum screening and who followed this up with amniocentesis, of women who had given birth to a child with Down's syndrome and of obstetricians, nurses, and genetic counselors. This study identified three positions associated with the professional roles involved in the process of prenatal genetic counseling. These included, first, the professional status constructed by health system and knowledge of genetics, second, the lived experiences of pregnant women in genomic era, and third, the intersubjectivity in prenatal genetic counseling. In conclusion, this study offers insights into the effects of prenatal screening on disability, informed consent for prenatal testing, and person-centered prenatal counseling.

主题分类 社會科學 > 心理學
参考文献
  1. 陳淑齡、余玉眉(2000)。懷有唐氏症胎兒的初孕婦接受終止妊娠過程的生活處境。護理研究,8,177-189。
    連結:
  2. 蔣欣欣、陳美碧、蔡欣玲(2003)。建構照顧情境中的專業自我-自我與他者之間。本土心理學研究,19,201-226。
    連結:
  3. Abuelo, D. N.(1991).Anxiety in women with low maternal serum alpha-fetoprotein screening results.Prenatal Diagnosis.
  4. Adler, B.,Kushnick, T.(1982).Genetic counseling in prenatally diagnosed trisomy 18 and 21.Psychosocial aspects. Pediatrics.
  5. Al Jader, L. N.,Parry-Langdon, N.,Smith, R. J.(2000).Survey of attitudes of pregnant women towards Down syndrome screening.Prenatal Diagnosis.
  6. Anderson, G. W.(1999).Nondirectiveness in prenatal genetics: patients read between the line.Nursing Ethics,6,126-136.
  7. Angrosino, M. V.,Kimberly A.Mays de Perez(2000).Rethinking observation: from method to context.Handbook of qualitative research,673-702.
  8. Bartels, D. M.(1997).Nondirectiveness in genetic counseling: a survey of practitioners.American Journal of Medical Genetics,72,172-179.
  9. Benkendorf, J. L.,Peshkin, B. N.,Lerman, C.(2000).Impact of genetic information and genetic counseling on public health.Genetics and public health in the 21st century,361-384.
  10. Bernhardt, B. A.,Biesecker, B. B.,Mastromarino, C. L.(2000).Goals, Benefits, and Outcomes of Genetic Counseling: Client and genetic Counselor Assessment.American Journal of Medical Genetics,94,189-197.
  11. Biesecker, B. B.(2003).Back to the future of genetic counseling: commentary on “psychosocial genetic counseling in the post-nondirective era”.Journal of Genetic Counseling,12,213-217.
  12. Bosco, A. F.(2000).Caring for the care-giver: the benefit of a peer supervision group.Journal of Genetic Counseling,9,425-430.
  13. Buchanan, A.(2001).From chance to choice, 1 ed,.
  14. Chao, A-S.(1999).Second trimester maternal serum screening using alpha fetoprotein, free beta human chorionic gonadotropin and maternal age specific risk: Result of Down syndrome in an Asian population.Acta Obstetricia et Gynecologica Scandinavica.
  15. Charmaz, K.(2000).Grounded Theory: objectivist and constructivist methods.Handbook of qualitative research.
  16. Dodds, S.(2002).Choice and Control in Feminist Bioethics.Relational autonomy,213-235.
  17. Earley, K. J.(1991).Patient attitudes toward testing for maternal serum alpha-fetoprotein values when results are false-positive or true-negative.Southern Medical Journal,84,439-442.
  18. Edwards, S.(2002).Philosophy of disablement.Nursing Philosophy,3,182-183.
  19. Evans, M. I.(1988).Determinants of altered anxiety after abnormal maternal serum alpha-fetoprotein screening.American Journal of Obstetrics and Gynecology,159,1501-1504.
  20. Gekas, J.(1999).Informed consent to serum screening for Down syndrome: are women given adequate information?.Prenatal Diagnosis.
  21. Giarelli, E.(2003).Safeguarding being: a bioethical principle for genetic nursing care.Nursing Ethics,10,255-325.
  22. Green, D.,Malin, J.(1988).Prenatal diagnosis: When reality shatters parents` dreams.Nursing,18,61-64.
  23. Jennings, B.(2000).Technology and the Genetic Imaginary: Prenatal Testing and the Construction of Disability.Prenatal testing and disability rights.
  24. Keenan, K. L.(1991).Low level of maternal serum alpha-fetoprotein: Its associated anxiety and the effects of genetic counseling.American Journal of Obstetrics and Gynecology,164,54-56.
  25. Kessler, S.(2000).Psyche and helix: psychological aspects of genetic counseling.
  26. Marteau, T. M.(1992).The psychological effects of false-positive results in prenatal screening for fetal abnormality: A prospective study.Prenatal Diagnosis.
  27. McAllister, M.(2001).Grounded theory in genetic counseling research.Journal of Genetic Counseling,10,233-250.
  28. McConkie-Rosell, A.,Sullivan, J. A.(1999).Genetic counseling-stress, coping, and the empowerment perspective.Journal of Genetic Counseling,8,345-357.
  29. Mckinlay, J. B.(1982).From “promisimg report” to “standard procedure”: seven stages in the career of a medical innovation.Technology and the future of health care.
  30. Meyers, D. T.(2000).Intersectional Identity and the Authentic Self: Opposites Attract!.Relational autonomy,151-180.
  31. Newell, C.(2000).Biomedicine, genetics and disability: Reflections on nursing and a philosophy of holism.Nursing Ethics,7,227-237.
  32. Parens, E.,Asch, A.(2000).The Disability Rights Critique of Prenatal Genetic Testing: Reflections and Recommendations.Prenatal testing and disability right.
  33. Petersen, A.(1999).Counselling the genetically “at risk”: the poetics and politics of “non-directiveness”.Health, Risk & Society,1,253-265.
  34. Plunkett, K. S.,Simpson, J. L.(2002).A general approach to genetic counseling.Obstetric Gynecology Clinic North America.
  35. Press, N.,Clayton, E. W.(2000).Genetics and Public Health: Informed Consent Beyond the Clinical Encounter.Genetics and public health in the 21st Century.
  36. Pueschel, S. M.(1987).Maternal alpha-fetoprotein screening for Down`s syndrome.The New England Journal of Medicine,317,376-378.
  37. Richards, L.(1999).Using NVivo in Qualitative Research.
  38. Rogers, C. R.(1969).Freedom to learn.
  39. Ruddick, W.(2000).Ways to Limit Prenatal Testing.Prenatal testing and disability rights.
  40. Ryan, G. W.,Bernard, H. R.(2000).Data Management and analysis methods.Handbook of qualitative research.
  41. Smith, D. K.,Shaw, R. W.,Marteau, T. M.(1994).Informed consent to undergo serum screening for Down`s syndrome: the gap between policy and practice.British Medical Journal,309,776.
  42. Tak, S. H.,Nield, M.,Becker, H.(1999).Use of a computer software program for qualitative analysis-part I: introduction to nudist.Western Journal of Nursing Research,21,111-117.
  43. Tercyak, K. P.,Jet al(2001).Psychological response to prenatal genetic counseling and amniocentesis.Patient Education and Counseling,43,73-84.
  44. Weil, J.(2003).Psychosocial genetic counseling in the post-nondirective era: a point of view.Journal of Genetic Counseling,12,199-211.
  45. Weinans, M.(2000).How women deal with the results of serum screening for Down syndrome in the second trimester of pregnancy.Prenatal Diagnosis.
  46. Weitman, E. A.(2000).Software and qualitative research.Handbook of qualitative research.
  47. Wertz, D. C.,Fletcher, J. C.,Mulvihill, J. J.(1990).Medical geneticists confront ethical dilemmas: cross-cultural comparisons among 18 nations.American Journal of Human Genetics,46(6),1200-1213.
  48. Zaner, R. M.(2003).Ethics and the clinical encounter.
  49. 台北市政府衛生局、婦幼醫院(2002)。新婚優生保健手冊。
  50. 汪文聖(2001)。醫護倫理之存有論基礎初探:海德格走向優納斯。哲學雜誌。
  51. 周桂田(2001)。科學風險:多元共識之風險建構。第二現代-風險社會的出路?,47-76。
  52. 孫治本(2001)。風險抉擇與形而上倫理學。第二現代-風險社會的出路?,77-98。
  53. 郭義興(2002)。台北,國立台灣大學。
  54. 陳麗美(1997)。台灣地區嬰兒死亡率、新生兒死亡率、週產期死亡率之流行病學調查研究
  55. 蔣欣欣(2002)。由護理實踐建構倫理進路。護理雜誌。
  56. 蔣欣欣、余玉眉(2001)。護病間的互為主體性。國立政治大學哲學學報,7,307-322。
  57. 蔣欣欣、喻永生(1997)。唐氏症嬰幼兒父母認知真相後之歷程。護理研究,5,19-29。
  58. 羅哲思、宋文里(1961)。成為一個人:一個治療者對心理治療的觀點
  59. 顧忠華(2001)。風險、社會與倫理。第二現代-風險社會的出路?,17-46。
被引用次数
  1. 傅大為(2016)。短評施麗雯〈臺灣的道德先鋒〉一文。科技、醫療與社會,22,285-291。
  2. (2020)。病人及家屬在末期醫療照護抉擇上的倫理難題。生死學研究,21,1-28。