Tóth Adél, Nyári Tibor, Szabó János
Department of Medical Genetics, Albert Szent-Györgyi Medical and Pharmaceutical Centre, University of Szeged, Hungary.
Eur J Obstet Gynecol Reprod Biol. 2008 Mar;137(1):3-9. doi: 10.1016/j.ejogrb.2007.10.003. Epub 2007 Dec 11.
Over the last few decades, the goal of genetic counselling has been interpreted as giving value-neutral information about the genetic risk, the genetic disorder, and screening, diagnostic or treatment possibilities in order to promote the autonomous decision-making of counsellees. Recently, however, the theoretical possibility and the practical necessity of this non-directive approach have been questioned, and redefinition of the objective of genetic counselling is required. In our paper, we intend to contribute to this clarification process by critically examining the views of Hungarian genetic counsellors on the objective of genetic counselling, and by exploring the expectations of the counsellees. Our ethical analysis has revealed that counsellors supported divergent counselling goals, such as preventing diseases by giving direct recommendations, promoting the autonomous decision-making of clients by providing value-neutral information and facilitating careful deliberation by actively taking part in the resolution. The self-administered survey conducted among 170 counsellees has discovered that the majority of the respondents expected detailed information (98%), psychological support (68%), the counsellor's help in making decisions (68%), and the possibility of control over the resolution process (92%). The need to tailor help to individual clients has also been demonstrated, since a direct relationship was found between success in decision-making and whether unanswered questions remained or the calming effect of the consultation was felt. Of the methods proposed by the counsellors, the interpretive counselling approach promised fulfilment of the clients' wishes and respect for the accepted ethical norms; thus, teaching of this approach should be taken into consideration during the development of the post-graduate training curriculum for counsellors.
在过去几十年里,遗传咨询的目标被解释为提供关于遗传风险、遗传疾病以及筛查、诊断或治疗可能性的价值中立信息,以促进咨询对象的自主决策。然而,最近这种非指导性方法的理论可能性和实际必要性受到了质疑,因此需要重新定义遗传咨询的目标。在我们的论文中,我们打算通过批判性地审视匈牙利遗传咨询师对遗传咨询目标的看法,并探索咨询对象的期望,为这一澄清过程做出贡献。我们的伦理分析表明,咨询师支持不同的咨询目标,比如通过给出直接建议来预防疾病、通过提供价值中立信息来促进客户的自主决策以及通过积极参与决策过程来促进审慎思考。在170名咨询对象中进行的自我管理调查发现,大多数受访者期望获得详细信息(98%)、心理支持(68%)、咨询师在决策方面的帮助(68%)以及对决策过程的掌控可能性(92%)。根据决策成功与否以及是否仍有未解答的问题或者是否感受到咨询的安抚效果之间存在直接关系,还证明了需要针对个体客户提供帮助。在咨询师提出的方法中,解释性咨询方法有望满足客户的愿望并尊重公认的伦理规范;因此,在制定咨询师研究生培训课程时应考虑教授这种方法。