家族性大腸腺腫症患者が子どもへ遺伝情報開示するまでの意思決定過程の構造

Components of Decision-making Process That Familial Adenomatous Polyposis Patients Go through When Disclosing Genetic Information to Their Children

要旨

　目的：本研究は，家族性大腸腺腫症罹患者が子どもの遺伝的リスクを認知し，遺伝情報開示に至るまでのプロセスを明確化することを目的とした．

　方法：研究協力者8名を対象に，半構成的面接法を用いてデータ収集を行い，内容分析を行った．

　結果：子どもに遺伝情報開示をするまでのプロセスとしては，【闘病生活にまつわる過去の体験】【遺伝的リスクを子どもに伝える親としての準備性】【遺伝情報開示に至るきっかけ】の3つのカテゴリーが抽出された．遺伝情報の伝え方としては，子どもに遺伝的リスクを伝える場合と，遺伝子検査の結果をもとに遺伝情報を伝える場合があった．発症前診断として子どもの遺伝子検査を受けることに関しては，子どもが意思確認のできる年齢にあるかどうかに応じて，施行の有無を決定していた．

　結論：遺伝医療に携わる看護職は，家系員のがんを予防するという観点からの専門的価値を押しつけたり，遺伝子診断に関する情報提供をすることを重視するのではなく，子どもに遺伝情報開示をするまでのプロセスの中で，まずは現在患者が直面している問題を解決していく必要がある．

Abstract

　Objectives：This study was designed to clarify the process that familial adenomatous polyposis patients go through, from recognizing the genetic risks faced by their children to disclosing genetic information to their children.

　Methods：The study involved semi-structured interviews with eight familial adenomatous polyposis patients and qualitative analysis of the collected interview data.

　Results：As a result of the analysis, the following three categories were extracted with respect to the process experienced by study participants before disclosing genetic information to their children：1) Past experience that might have influenced participants' disclosure of genetic information to their children；2) Preparations participants made before communicating genetic information to their children；and 3) Factors that influenced participants to make up their minds to communicate genetic information to their children. Regarding how to communicate genetic information, some participants communicated genetic risks, and others communicated genetic information based on the results of genetic tests. Regarding the decision about having their children undergo genetic testing as a presymptomatic test, participants made decisions depending on whether their children were old enough to be able to express their own wishes.

　Conclusion：The study results suggest that nurses should not force their professional values or place too much importance on providing information regarding genetic testing, from the standpoint of preventing family members from contracting cancer. Instead, nurses involved in genetic medicine should first try to solve problems being faced by patients, in the process prior to disclosing genetic information to their children.