Genetic Responsibility in Germany and Israel : practices of prenatal diagnosis / edited by Christina Schües.

Format:

Book

Contributor:

Schües, Christina, editor.

Series:

Bioethik, Medizinethik.

Bioethik, Medizinethik

Language:

English

Subjects (All):

Prenatal diagnosis.

Biopolitics.

Physical Description:

1 online resource (377 pages) : illustrations.

Edition:

1st ed.

Place of Publication:

Bielefeld : transcript Verlag, 2022.

Language Note:

In English.

Biography/History:

Schües Christina : Christina Schües is a professor for philosophy at the Institute for the History of Medicine and Science Studies at Universität Lübeck and titular professor for philosophy at the Institute for Philosophy and Art Sciences at Leuphana Universität Lüneburg. Her research focuses on political ethics, the power of time, the phenomenology of relationality, inter-corporeality and life, as well as the philosophy of medicine, especially in regard to reproductive and gene diagnostic technology.

Summary:

Prenatal diagnosis, especially noninvasive prenatal testing (NIPT), has changed the experience of pregnancy, prenatal care and responsibilities in Israel and Germany in different ways. These differences reflect the countries' historical legacies, medico-legal policies, normative and cultural identities. Building on this observation, the contributors of this book present conversations between leading scholars from Israel and Germany based on an empirical bioethical perspective, analyses about the reshaping of 'life' by biomedicine, and philosophical reflections on socio-cultural claims and epistemic horizons of responsibilities. Practices and discussions of reproductive medicine transform the concepts of responsibility, and irresponsibility.

Contents:

Intro

Contents

Introduction - How Prenatal Diagnosis is Entangled in Historical and Social Contexts

The rise of new concepts and conditions

The focus on Germany and Israel

About the book and its four parts

References

I. Biomedical rationalisations of "life", reproduction and responsibility? Historical, social and ethical perspectives

1. Biological Reproduction, Offspring, and Radical Otherness

Commentary - The Ethics of Never Again

2. Origins and Practices of Genetic Risk and Responsibility

Era of responsibility

Risk, security and genetic responsibility

NIPT, genetic risk and genetic responsibility

Assuming genetic responsibility correlates withperceiving genetic risk

Genetic irresponsibility, non‐responsibility, and care responsibility

II. Governance and biopolitics

3. Non‐Invasive Prenatal Testing in Germany and Israel

1. Foundations of the comparison

1.1 The global debate on public funding for NIPT

1.2 Establishing the comparison between Germany in Israel

1.3. Mapping out the regulatory framework

1.3.1 Prenatal genetic services

Israel

Germany

1.3.2 Laws on genetic testing

1.3.3 Laws on abortion

1.3.4 Findings from the framework comparison

2. Discourses on implementation: the stakeholders involved and their positions

2.1 Medical associations

2.2 Policy body in charge

2.3 Advocacy organisations and additional stakeholders

2.4 Medical associations

2.5 Policy bodies in charge

2.6 Advocacy organisations and additional stakeholders

3. Discussing key themes

4. Conclusion

4. PND in Israel: Public Health Services and Uptake in Cultural Context

PND in Israel: An Overview

PND and "Community Genetics".

PND and the Construction of Disability

More is Better? Public/Economic Pressures in PND

In Lieu of Conclusion

5. NIPT in Germany

"No, but…": The Abortion Compromise

"No, but…": The Legal Regulation of Pre‐Implantation Genetic Diagnosis

The Prenatal Diagnosis Dispositif in Germany

NIPT: An unsolvable dilemma?

NIPT: Serving a Medical Purpose?

Conclusion

Commentary - "Yes, but…" vs. "no, but…": Ambivalences towards Prenatal Diagnosis in Israel and Germany

III. Comparative empirical bioethics of reproductive practices and their social contexts

6. Views on Disability and Prenatal Testing Among Families with Down Syndrome and Disability Activists

Objectives

Methodology

Participants

Instrumentation and procedures

Data analysis

Results

(i) Responsibility as parents

(ii) Views about disability

(iii) Views about eugenics

(iv) Feeling guilty

(v) Public attitudes about disability and prenatal testing

Discussion

Conclusions

Acknowledgement

A Commentary from Disability Activism in Israel

A Comment from Disability Studies in Germany

7. Socio‐Cultural and Religious Views on Prenatal Diagnosis in Israel and Germany

8. What Does Prenatal Testing Mean for Women Who Have Tested?

Methodology of this analysis

Findings

a) German and Israeli interviews

b) Patterns found

Table 1: Typical meaning patterns of prenatal testing

(1) To test in order to gain knowledge

(2) To test in order to be prepared

(3) To test in order to reduce uncertainty and to increase certainty

(4) To test in order to become capable of deciding

(5) To test in order to avoid suffering

(6) To test in order to satisfy the social environment

(7) To test in order to fulfil the physician's recommendation

A few observations.

Discussion

Contributions of authors

9. "Something is Not Quite Right" - Two Cinematic Narratives about Decision‐Making after Prenatal Diagnosis

Two experiences of pregnancy and familial relationships

Interrogating prenatal sociality

IV. Intertwining knowledge practice, epistemology and ethics

10. The Unconditionality of Parent‐Child Relationships in the Context of Prenatal Genetic Diagnosis in Germany and Israel

1.1 Locating unconditionality and its counterparts

1.2 Unfolding unconditionality

1.3 Gaps in the concept

2.1 The example of Israel

2.2 The example of Germany

2.3 Concluding reflections on the comparison

11. Can Not Wanting to Know Be Responsible?

1. The right not to know

2. Concepts of not‐knowing

2.1 Traditional thinking: Not‐knowing as deficiency

2.2 Manifestations of not‐knowing

3. Uncertainty and insecurity

3.1 Standard procedures and future retrospective view

3.2 Empowerment and insecurity

3.3 What non‐knowledge and not‐knowing mean

4. The reasoning behind deciding not to know: The issue of responsibility

4.1 Existential dimension

4.2 Intergenerational dimension and the relationship with the child

4.3 Social Dimension: Setting the discourse

5. Conclusion

12. Comparison through Conversation

1. On philosophical conversation

1.1 From multinational comparison to transnational conversation

1.2 Conversation explained

1.3 A word about the tasks of philosophy

1.4 Philosophy in a transnational perspective

1.5 "Thin" and "thick" morality reconsidered

2. Personal reflections

2.1 Carrying a foetus diagnosed with anencephaly to term (Yael Hashiloni‐Dolev)

2.2 Elephants in the room (Christoph Rehmann‐Sutter)

2.3 Normality can be surprising. Facing the silence (Christina Schües).

2.4 How to Sail a Boat (Aviad Raz)

Biographies.

Notes:

CC BY

Description based on publisher supplied metadata and other sources.

ISBN:

9783839459881

3839459885

OCLC:

1402031264