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E-raamat: Choosing Between Possible Lives: Law and Ethics of Prenatal and Preimplantation Genetic Diagnosis [Hart e-raamatud]

  • Formaat: 374 pages
  • Ilmumisaeg: 18-Dec-2007
  • Kirjastus: Hart Publishing
  • ISBN-13: 9781847313805
  • Hart e-raamatud
  • Hind: 89,98 €*
  • * hind, mis tagab piiramatu üheaegsete kasutajate arvuga ligipääsu piiramatuks ajaks
  • Formaat: 374 pages
  • Ilmumisaeg: 18-Dec-2007
  • Kirjastus: Hart Publishing
  • ISBN-13: 9781847313805
To what extent should parents be able to choose the kind of child they have? The unfortunate phrase 'designer baby' has become familiar in debates surrounding reproduction. As a reference to current possibilities the term is misleading, but the phrase may indicate a societal concern of some kind about control and choice in the course of reproduction. Typically, people can choose whether to have a child. They may also have an interest in choosing, to some extent, the conditions under which they do so, such as whether they have a child with a serious disability or disease. The purpose of this book is to explore the difficult and controversial question of the appropriate ethical and legal extent of reproductive autonomy in this context. The book examines ethical, legal and public policy issues in prenatal screening, prenatal diagnosis (PND), selective abortion and preimplantation genetic diagnosis (PGD). It explores the ethics of these selection practices and the ability of current ethical guidelines and legal mechanisms, including the law on selective abortion and wrongful birth, to deal with advances in genetic and other knowledge in these areas. Unlike in the United States, in England the relevant law is not inherently rights-based, but the impact of the Human Rights Act 1998 inevitably raises questions about the proper scope of reproductive autonomy in this context. The implications of the analysis are considered for the development of relevant law, public policy and ethical guidelines and will be of interest to academics in medical law and ethics, health professionals, lawyers, those working on public policy and students with an interest in these issues.
Acknowledgements vii
List of Abbreviations
xv
Table of Cases
xvii
Table of Legislation
xxi
Introduction --- Purpose and Plan of the Book 1(10)
Ethical Issues in Selection Practices --- Whose Interests are at Stake?
11(60)
Introduction
11(1)
Reproductive Autonomy and the Embryo or Fetus
12(14)
Choosing Whether to Have a Child
12(2)
The Possibility of a Disabled Child
14(1)
Reproductive Autonomy and the Positive Duties Inherent in Child-raising
15(5)
The Moral Status of the Embryo and Fetus
20(3)
The Scope of Reproductive Autonomy: Interests, Reasons and Rights
23(3)
Understandings of Disability
26(8)
Models of Disability
27(1)
Flourishing
28(1)
The Severity of a Condition
29(1)
A life that someone may think is not worth living
29(1)
A life that someone will think is worth living
30(2)
Severity: whose interests?
32(2)
Birth and Harm
34(14)
A Life that Someone May Think is Not Worth Living
34(3)
A Life that Someone Will Think is Worth Living
37(1)
Person- and Non-person-affecting Principles
38(4)
Moral requirements
42(2)
The stage of development of the fetus
44(1)
The difficulty of judging a disability to be serious
45(1)
Costs or difficulties or loss of benefits for parents
46(1)
Moral permissibility
47(1)
The Interests of People with Impairments
48(17)
Models of Disability and Discrimination Issues
48(2)
Information and Assumptions about Suffering or Difficulty
50(4)
The `Expressivist Objection'
54(1)
The fetus and personhood
54(3)
Devaluing impairments but equally valuing those with impairments
57(2)
The `any/particular' distinction
59(3)
Interweaving parents' and children's interests
62(2)
Opportunity --- non-person-affecting principles again
64(1)
Eugenics
65(3)
Conclusions
68(3)
Selective Abortion --- The Interpretation and Operation of the Law
71(72)
Introduction
71(2)
Exploring the Terms of the Disability Ground of the Abortion Act
73(13)
`Substantial Risk'
73(1)
Hansard
73(1)
RCOG guidelines
73(3)
`Serious Handicap'
76(1)
Hansard
76(1)
RCOG guidelines
77(1)
The probability of effective treatment in utero or after birth
78(3)
The probable degree of self-awareness and of ability to communicate with others
81(1)
The suffering that would be experienced
82(1)
The extent to which the actions essential for health that normal individuals perform unaided would have to be provided by others
83(2)
The probability of being able to live alone and to be self-supporting as an adult
85(1)
A Woman's or Couple's Moral and Legal Interests in Decisions Relating to Selective Abortion
86(16)
Parents' Moral Interests in Being Able to Choose Whether to Have a Disabled Child
86(3)
Legal Interests
89(1)
Parents' possible legal interests in the interpretation of the disability ground of the Abortion Act
89(5)
Implications of the wrongful birth cases
94(8)
Cases Under the European Convention on Human Rights
102(17)
Article 8
102(1)
Article 2
103(5)
Legal Protection: Fetal Rights or Fetal Value?
108(4)
Article 3
112(4)
Article 14
116(3)
Abortion for Fetal Anomaly After 24 Weeks
119(18)
The Pregnant Woman's Interests
122(2)
The Fetus's Interests
124(10)
Factors Overall
134(3)
Conclusions
137(6)
Informational Duties --- the Impact on Prenatal Screening, Diagnosis and Selective Abortion
143(54)
Introduction
143(1)
Consent to Screening and Diagnosis: Information and Counselling
144(9)
Capacity
145(1)
Voluntariness: Offers of Screening and Testing
145(4)
Information: Nature and Purpose, Not Results of Screening or Testing
149(4)
The Effect of a Rights-Based Approach to Abortion on Prenatal Screening and Testing
153(7)
The Right to Abort For Any Reason
153(2)
The Role of the Medical Profession
155(2)
Autonomy --- Information That Aids, Not Burdens
157(3)
The Role of Wrongful Birth Liability
160(18)
Tort's Concern to Protect Reproductive Autonomy, But Only So Far
160(2)
Issues of Conscience for the Medical Profession
162(4)
The Basis of the Wrongful Birth Action
166(3)
The Standard of Care: Traditional Negligence or Negligent Non-disclosure
169(3)
The risk of a given fetal condition
172(6)
The Relationship Between the Seriousness of a Fetal Condition and the Reasons for Exercising Reproductive Autonomy
178(14)
Reasons: A Moral Framework
178(3)
Reasons: The Law
181(1)
Reasons in abortion law
181(1)
Reasons in wrongful birth case law
182(3)
Defining seriousness in wrongful birth case law
185(2)
Implications for the current and future scope of the wrongful birth action
187(5)
Conclusions
192(5)
Preimplantation Genetic Diagnosis --- The Interpretation and Operation of the Law
197(50)
Introduction
197(2)
Background and Legal Context
199(6)
The Recommendations on Risk and Seriousness
205(6)
`Significant Risk'
207(1)
`Serious Genetic Condition'
208(1)
The PGD Guidance
209(2)
Health Professionals' and Scientists' Views and Experience
211(32)
`Significant Risk'
212(1)
`Serious Genetic Condition'
213(1)
The view of those seeking treatment of the condition
214(6)
The likely degree of suffering associated with the condition
220(1)
Very serious conditions
220(5)
Less serious conditions
225(1)
Cystic fibrosis
225(3)
Down's Syndrome
228(9)
The extent of any intellectual impairment
237(1)
The extent of social support available
237(1)
The family circumstances of the people seeking treatment
238(1)
The availability of effective therapy or management now and in the future
239(1)
The speed of degeneration in progressive disorders
240(2)
Their previous reproductive experience
242(1)
Conclusions
243(4)
The Future Scope of Preimplantation Genetic Diagnosis
247(50)
Introduction
247(2)
Fears of Trivial or Eugenic Use of Embryos
249(3)
The Interests at Stake: The Reasons for Choosing Between Possible Lives
252(36)
The Moral and Legal Status of the Embryo and Fetus
253(3)
The Subject of Moral Concern
256(1)
Selecting Against `Serious' Genetic Anomalies
257(3)
Selecting Against Or For Purely Aesthetic or Generally Trivial Features
260(1)
Parents' interests and attitudes: central versus marginal features
261(3)
The child's interests: autonomy and flourishing
264(6)
The claims of the embryo and the processes in PGD
270(4)
The professionals involved in IVF and PGD
274(1)
The interests of those with impairments
275(2)
The issue of legalisation
277(2)
Selecting in Favour of `Serious' Features
279(1)
Selecting for intelligence
280(3)
Selecting for better health
283(2)
Selecting for specific aptitudes or abilities
285(3)
Conclusions
288(9)
Uses of Preimplantation Genetic Diagnosis --- Two Particular Cases
297(54)
Introduction
297(1)
Selecting for Disability
297(22)
Person-affecting and Non-Person-Affecting Principles and Harm Revisited
298(2)
Choosing a Deaf Embryo Versus Failing to Cure a Deaf Child
300(4)
`Sarah Can Hear, But I Can't'
304(3)
Parents' Possible Interests in Selecting for Disability and Implications for Third-Party Assistance
307(2)
Deafness and Opportunity
309(5)
Selecting for Achondroplasia
314(1)
Selecting for Down's Syndrome or Cystic Fibrosis
315(3)
Implications Overall
318(1)
Sex Selection
319(26)
Parents' and Children's Interests
321(2)
The Claims of the Embryo and the Processes in IVF and PGD
323(3)
The Views of Clinicians, Scientists and Those With Impairments
326(1)
The Views of the HFEA and Government: Is Legal Prohibition Justified?
327(3)
Analysis under Article 8(1) of the ECHR
330(2)
Analysis under Article 8(2) of the ECHR
332(1)
In accordance with law
332(1)
Legitimate aim
333(1)
Necessary in a democratic society
333(2)
Pressing social need
335(1)
Proportionate to the legitimate aim pursued
335(1)
Relevant and sufficient reasons
336(1)
Implications: justifiable interference?
336(9)
Conclusions
345(6)
Bibliography 351(8)
Index 359


Rosamund Scott is Professor of Medical Law and Ethics at the Centre of Medical Law and Ethics and the School of Law, King's College, London. She is also a barrister. She is currently (since 2006) a member of the Ethics Committee of the Royal College of Obstetricians and Gynaecologists.