出生前遺伝子診断による選択的妊娠中絶の語り―モノグラフ

Story of Selective Abortion following Prenatal Genetic Testing：Monograph

要旨

　当事者の視点から遺伝子診断による選択的中絶の意味を記述し，看護への示唆を得ることを目的に，Cohenらの解釈学的現象学を用い，同意の得られた場合に限り遺伝病の子どもを持つ夫婦3組の出生前遺伝子診断の参加観察と，1名の研究参加者に3回の深いインタビューからデータを得た．浮かび上がった主テーマ「つながりの破壊」と「障害者の存在に対する相反する価値との直面」を基に物語を再構成した．

　出生前遺伝子診断では遺伝病という衝撃が生んだ，夫婦の心のすれ違いと障害の差異化によって破壊された人とのつながりの中で，家族の中での犯人探し，自己疎外，障害者の存在の肯定と否定を招き，選択的中絶によって相容れない価値観に引き裂かれ，内なる優生思想と出会いつつ，あらたなつながりを希求することとなっていた．

　よって看護には家族と社会とクライエントとのつながりに関心を払い，診療科を超えた継続的ケアが必要とされていることが示唆された．

Abstract

　The objective of this research was to describe the experience of selective abortion following prenatal genetic testing in a purposive sample of parents of children with hereditary diseases in order to provide suggestions for nursing in conjunction with genetic testing during pregnancy. The study used methods adapted from hermeneutic phenomenology described by Cohen et al., including participant observations and in-depth interviews. The setting of prenatal genetic testing was observed when three couples to participate at the time after informed consent, and interviewed three times for provided one person of an agreement to participate in a study. Two major themes emerged from these interviews,: the “breakdown of ties between others”and“the realization that they had conflicting values concerning disabilities in human beings.”Based on these main themes, narrative was represented, as follows.

Ⅰ. The effect of known genetic diseases

　1. Discordance between couple

　2. Differentiation between disabilities

　3. Looking for the root of genetic disease in a family

　4. Self-alimentation

Ⅱ. Selecting life

　1. Tentative fetal presence

　2. Being torn between negation and affirmation of disabled people

　3. Dealing with a dilemma: guilty feelings about forgetting the aborted child versus antipathy regarding grief work of the loss

　4. Meeting with internal eugenic idea

Ⅲ. Seeking to repair ties

　1. The ties between the couple and the family

　2. The need to lie

　3. Fear that one's present suffering will again be experienced by future generations

　These results suggest that nurses have to apply care to relationships with clients and their families, as well as society. Moreover, for consistent counseling and care, it is necessary for us to establish new nursing area that integrates genetic, pediatric, obstetric clinic, and the obstetric ward.