Cover of book: Between Ethical Oversight and State Neutrality
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Between Ethical Oversight and State Neutrality

Introducing Controversial Technologies into the Public Healthcare Systems of Germany, Italy and England
Authors:
Publisher:
 2023

Summary

Introducing ethically controversial (bio)technologies into the public healthcare system inevitably provokes societal and legal conflict. While it is often argued that these choices ought to comply with moral standards, the consideration of ethical and religious concerns raises a serious problem of legitimacy. By adopting the position that the state must act in an ethically neutral manner this book provides a critical legal analysis of the relationship between ethics and law and its implications for the public healthcare system. The ensuing examination combines a comparative, legal-constitutional perspective with the investigation of two case studies: preimplantation genetic diagnosis (PGD) and non-invasive prenatal testing (NIPT).

Keywords

Bibliographic data

Copyright Year
2023
ISBN-Print
978-3-7560-1363-0
ISBN-Online
978-3-7489-1891-2
Publisher
Nomos, Baden-Baden
Series
Studien aus dem Max-Planck-Institut für Sozialrecht und Sozialpolitik
Volume
79
Language
English
Pages
477
Product Type
Monograph

Table of contents

ChapterPages
  1. Titelei/Inhaltsverzeichnis 1 - 26 Download chapter (PDF)
  2. Download chapter (PDF)
    1. 1. Problem Statement
    2. 2. State of Research
    3. 3. Research Objectives and Methodology
    4. 4. Overview of the Structure
  3. Download chapter (PDF)
        1. 1. Health Technologies and Ethical Pluralism
        2. 2. The Bioethical Approach
          1. a What is Special about Reproductive Technologies: The Question of Moral Status and Personhood
            1. i. Admissibility
            2. ii. Public Funding
          1. a A Positivist Approach
          2. b Ethical Concerns Turned Legal
          1. a Preservation of Ethical Autonomy and Pluralism
          2. b Ethical Neutrality of the State
          3. c The Separation of Ethics and Law from an Intra-Legal Perspective
        1. 1. Constitutional Foundations
          1. a Neutrality of the State and the Fundamental Right to Personal Freedom and Physical Integrity
          2. b Neutrality of the State and the Statutory Health Insurance
        1. 1. The Principle of Laicity in the Constitution
          1. a Laicity and the Fundamental Right to Health
          2. b The Principle of Laicity in the National Health Service
          1. a Procedural Principles and Political Constitutionalism
          2. b A Secular and Neutral State
            1. i. Ethics and Law in Courts’ Decisions
            2. ii. Acceptability of Legislation through Procedural Legitimacy
            1. i. Procedural Duties and Rights in the NHS
            2. ii. Reasonableness and Relevancy in Judicial Review
            3. iii. Accountability for Reasonableness in the NHS
        1. 1. Constitutional Framework
        2. 2. Coverage and Reimbursement of Ethically Controversial Health Technologies
  4. Download chapter (PDF)
        1. 1. Ethical Approach
          1. a Legislative Proposal and Public Debate
          2. b Case Law
            1. i. The Introduction of Three Draft Bills
            2. ii. Opinion of the German Ethics Council
            3. iii. Parliamentary Debates
          2. b Introduction of §3a Embryo Protection Act
          3. c Ethics and Law in PGD Regulation
            1. i. Procedure before the Ethics Commissions
            2. ii. PGD Commissions before the Administrative Courts
            3. iii. Influence on Patients’ Uptake of PGD
        1. 1. Lack of Public Coverage
        2. 2. Reform Proposals
        1. 1. Ethical Approach
          1. a Ministerial Guidelines and First Case Law
          2. b PGD for Infertile Couples: Tacit Approval of the Constitutional Court
          3. c PGD for Fertile Couples
        3. 3. Constitutional Court Intervention
        1. 1. Lack of National Public Coverage
        2. 2. Direct Application of Constitutional Principles in the Case Law
        1. 1. Ethical Approach
          1. a HFEA’s Licensing of PGD
          2. b Case law on PGD
          3. c Emergence of ‘Regulatory Disconnections’
          1. a Reform preparation
          2. b The Human Fertilisation and Embryology Act (2008)
        1. 1. Initial Lack of National Public Coverage
        2. 2. Central Commissioning of PGD as Specialised Service
        1. 1. PGD within the Regulation of Fertility Treatments
        2. 2. Role of Case Law and Legislation in the Adoption of PGD Regulation
        3. 3. Substantial and Procedural Tools of PGD Regulation
        1. 1. Public Debates and Legislative Process
        2. 2. Statutory Texts and Implementation
        3. 3. Acceptance of PGD Regulation
        1. 1. Public Funding
        2. 2. Influence of Ethical Concerns on Public Funding and Patient Uptake
        1. 1. PGD Regulation and Implementation
        2. 2. Access to PGD: The Case of the Ethics Commissions in Germany
        3. 3. Public Funding
  5. Download chapter (PDF)
      1. I. NIPT in the Private Sector
          1. a Prenatal Diagnoses in the Statutory Health Insurance
          2. b Right to Know and Right Not to Know
          1. a Reactions to the Initiation of the Procedure
          2. b Health Technology Assessment
          3. c Consultation and Parliamentary Debate
          4. d Inclusion of NIPT in the Maternity Guidelines
        3. 3. Room for Ethical Considerations in the G-BA’s Assessment
      1. I. NIPT in the Private Sector
          1. a Prenatal Screening and Diagnoses in the Essential Levels of Care
          2. b Informed Consent
        2. 2. Coverage of NIPT in Different Regional Healthcare Systems
          1. a Guidelines of the Italian National Health Council
          2. b NIPT before the National Commission for the Updating of the Essential Levels of Care
          3. c Criteria for Updating the Essential Levels of Care and Room for Ethical Concerns
      1. I. NIPT in the Private Sector
          1. a Prenatal Screening and Diagnoses in the NHS
          2. b Autonomy and Informed Consent
          1. a The UK National Screening Committee’s Recommendation
          2. b Reactions to the UK NSC’s Assessment
          3. c Evaluative Implementation of NIPT in the NHS
          1. a The Nuffield Council of Bioethics’ Report on NIPT
          2. b Considerations of Ethical Aspects by the UK National Screening Committee
          3. c Room for Ethical Considerations in the Evaluation of Screening Programmes
      1. I. NIPT in the Private Sector
      2. II. Public Coverage of Traditional Prenatal Testing
      3. III. Autonomy and Informed Consent
        1. 1. Criteria for Access to NIPT
          1. a Public Debates
            1. i. Procedural Aspects
            2. ii. Substantive Elements
            1. i. Compliance with the Normative Framework
            2. ii. Calls for More Consideration of Ethics in the Decision-Making
  6. Download chapter (PDF)
      1. 1. Theoretical and Constitutional Foundations
      2. 2. Case Studies
      1. 1. Operationalisation and Neutrality
      2. 2. Between Ethical Concerns and Legitimate Legal Interests
      3. 3. Relevance of the Institutional Interplay
        1. a Neutrality in Coverage Decisions
        2. b Legal and Institutional Settings
      5. 5. Towards a Procedural Approach to Neutrality
    3. III. Closing Remarks
  7. Download chapter (PDF)
    1. Literature
    2. Materials

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