Royal Free and University College Medical School, London, UK
Correspondence: Address for correspondence: Royal Free and University College Medical School, University College Hospitals Trust, Department of Obstetrics and Gynaecology, 8896 Chenies Mews, London, WC1E 6HX, UK. E-mail: g.bahadur{at}ucl.ac.uk
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Abstract |
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Key words: Convention rights/European Court of Human Rights/genetics/Human Rights Act/reproduction
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Introduction |
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The European Convention on Human Rights (ECHR) was adopted on November 4, 1950 and came into force on September 3, 1953. The UK played a central role in drafting the Convention, and was the first state to ratify it. Although there was no obligation on contracting states to incorporate the Convention into domestic law, they were required under Article 1 to `secure' Convention rights to everyone within their jurisdiction and, under Article 13, to provide for an `effective remedy' for everyone whose rights are violated. Successive governments in the UK resisted incorporation on the basis that the requirements of Articles 1 and 13 were already fully provided for under UK law and procedure. However, there was growing concern about the extent to which the UK was meeting its obligations under the Convention, with unsuccessful defence in over 50 cases before the ECHR. It was against this background that the incorporation of the Convention became part of the Government's policy (White Paper, 1997).
The Human Rights Act 1998 (UK) (`the Act') passed on November 9, 1998, came into effect on October 2, 2000. Instead of having to take a case to the ECHR in Strasbourg, litigants can enforce their rights in the UK. The Act will have an unprecedented effect in virtually all areas of the UK legal systems. In line with those countries who have incorporated the `Convention' in domestic law, litigations are expected to increase (Leckie and Pickersgill, 1999). The extensive body of Convention law, as well as decisions of the domestic courts of other states which have incorporated the Convention, will become an integral part of UK jurisprudence. Once all domestic remedies have been exhausted, it is still open to the aggrieved party to petition the ECHR. There is no right of appeal from the ECHR. There are positive rights and negative rights where respectively, there could be substantial gain or not to have things done.
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The Convention rights incorporated under the Act |
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First protocol:
Sixth protocol:
Article 1: Abolition of death penalty.
Broadly, the Act applies to public and not private bodies. Public bodies include all government bodies such as the NHS, Human Genetics Advisory Commission (HGAC), Human Fertilisation and Embryology Authority (HFEA) and the Advisory Committee on Genetic Testing (ACGT), education authorities, prisons and social security bodies, and extends to public authorities such as local councils. Hybrid `publicprivate bodies' are likely to create difficulties when for example, doctors and health personnel treating an NHS patient are clearly subject to the requirements of the Act, and appear not subject to the Act when treating the patient in a private sector. Private clinics undertaking NHS contracts are effectively exercising a public function, and therefore come under a public body category. The Act creates a new cause of action against public authorities. Section 6 makes it unlawful for a public authority to act in a way which is incompatible with a Convention right unless it is required to so by legislation which cannot be interpreted compatibly with the convention. The Act states that the courts and tribunals are themselves public authorities, and are therefore subject to their own duty to comply with the Convention (Leckie and Pickersgill, 1999).
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Relevant Convention rights to human reproductive issues and practice |
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Significant aspects of UK fertility work come under the NHS and also uniquely under regulation within the HFEA Act 1990. The present disparities in fertility treatment services in the NHS mean that free fertility treatment, especially involving IVF/intracytoplasmic sperm injection (ICSI) could be accessed by childless couples, homosexual and lesbian couples, single persons, transsexual persons, widows and older women. It is of interest to note however, that while Article 12 relates to the right to found a family, it does not state what sexual orientation one has to be to found one. Overall, there will be a much greater level of scrutiny under Articles 2 (right to life), 8 (right to respect for family life), 12 and potentially relevant Articles 6 (right to a fair trial) and 14 which provides for non-discrimination in the enjoyment of these rights.
Presently, `The Sex Discrimination Act (1975)' (SDA) already makes it unlawful to discriminate against a woman by `refusing or deliberately omitting to provide her with goods or services' S29(1)(a). As fertility treatment is a `service', this is covered by the SDA. Within the SDA, whilst it is unlawful to discriminate on the grounds of sex (i.e. gender), this does not mean that it is unlawful to discriminate on the grounds of sexual orientation or marital status, for example, where services are refused to individuals who are not in a stable heterosexual relationship. However, Article 14 (`Sex, race, colour, language, religion, political or other opinion, national or social origin, association with a national minority, property, birth or other status') and Article 12 (`Men and women of marriageable age have the right to marry and found a family, according to the national laws governing the exercise of this right') may have scope in widening the meaning of discrimination. At present, the UK law does not recognize same-sex marriage and, given the commitments of the European Union to combat discrimination on the grounds of sexual orientation, this position is likely to change.
With regards to the use of a fertility service, in a recent case a prisoner serving a life sentence for murder was not allowed to have access to artificial insemination (AI) facilities to inseminate his wife (married in prison) for fear that the wife would be too old to have a child upon the applicant's release. An inevitable consequence of his lawful detention in custody was that he was unable to co-habit with his wife and could not enjoy conjugal visits from her, thereby making it impossible for his wife to conceive a child by the usual natural means. An inevitable consequence of his imprisonment required the co-operation and assistance of the Secretary of State to achieve the conception of the child by AI means. The Secretary of State refused on the basis that there was no medical need for AI, and there was concern about the stability of the applicant's relationship with his wife. In his Lordship's judgment, the right to respect for private and family life by Article 8 of the European Convention of Human Rights and Fundamental Freedoms (same in HR Act) was not engaged on the facts of the case. He accepted the Secretary of State's contention that although Article 8 required the state to respect family life where it existed, it did not give any right to create a family by the conception of a child. It was also agreed that there was no case in which it held that the right under Article 12 to marry and found a family provided a prisoner with a right of access to AI facilities, whether by reference to domestic law or the Convention. His Lordship's view was that the applicant was not entitled, as of right, to insist upon the co-operation and assistance being provided to him. Even if the applicant did have a civil right of access to facilities for AI, the present restriction on that right was an inevitable consequence of his imprisonment, because he had lost the right to freedom of association as a consequence of his imprisonment (Regina versus Secretary of State for the Home Department). In a separate case involving a private arrangement of sperm donation and following breakdown in relationship, the donor could no longer enjoy access to the child as he was not entitled to respect for family life, under Article 8 (G v Netherlands, 1993).
Fertility treatment covered by the HFEA requires patients to be provided with clear verbal and written information. However, much fertility treatment involving AI using husband's spermatozoa, ovulation induction, and male and female fertility-related surgical procedures do not come under statutory jurisdiction. In the 1980s, English courts had adopted a restrictive standard, which left it to doctors to decide how much to tell the patient about risks of treatment. With the HR Act, judges will have to take account of the right to respect private and family life, which includes a positive obligation on state bodies to give information about risks to health. Alongside this, there appears an interesting recent development. The UK government is expected to endorse a move allowing insurers to use the results of genetic tests to identify customers with hereditary illness. Although the test is expected to be restricted to Huntington's disease (a fatal brain condition), other conditions such as familial adenomatous polyposis, myotonic dystrophy, Alzheimer's disease, multiple endocrine neoplasia, hereditary motor and sensory neuropathy, certain breast and ovarian cancers may be included. As this amounts to a public body decision, any loss of rights and freedoms as a result of a retrospective application of information disclosure against the quality of informed consent at the time of the testing could attract appeals under the HR Act under Articles 8, 6 and 14.
The existing HFEA Act 1990 and its Code of Practice are envisaged to undergo interpretative re-evaluation, especially where unclear statements arise or where the application remains iniquitous, and affected individuals may challenge for their rights. The present HFEA Code of Practice implicitly asks clinics to consider the `welfare of the child who may be born (including the need of that child for a father) and of any other child who may be affected by the birth'. To most practitioners, this statement has remained unclear, with no significant guidance from the statutory body. The statutory `need for a mother' consideration appears not a requirement, but is assumed `implicit.' When viewed against the background of novel families such as the recent twin girls born in the USA to a British resident homosexual male couple, the need for a mother receives unequal consideration in the HFEA Act. In the latter case, interesting ethical, legal and practical dilemmas have been presented, such as residence permit (Burrell, 2000), naming of parents on the birth certificate, and marriage of parents. The inability to name parents of the same gender on the birth certificate could be viewed from the welfare of child perspective and as a continued non-recognition of the couple's existence, thereby attracting appeals under Articles 12 and 14.
A perceived list of imbalanced situations is: infertile patients enduring stringent requirement of welfare of child application when undergoing a licensed treatment, but not in an unlicensed treatment; egg-shared schemes and the need for two clinicians to ensure separation of recipient and donor which is not applied to the usual egg donor and recipient programme; information for donor offspring of their genetic parentage; information for the donors of genetic offspring born from their donation; the arbitrary application of ten live births per gamete donor in the UK and the differential treatment that clinics from other countries may favourably expect; the transfer and use of frozen gametes and embryos between EC countries and EC signatories, especially that semen is regarded as a commodity.
In another situation, the HFEA Act stipulates that a child conceived posthumously is legally `fatherless.' Diane Blood, who won the right to use her dead husband's spermatozoa taken without written consent, understood the potential of the HR Act. She and another widow have won their right legally to recognize the genetic father on the birth certificate, and an amendment to the HFEA Act is to be recommended by the Department of Health advisors, although it is anticipated that succession or inheritance rights will not follow (Martin, 2000). Transsexuals provide interesting dilemmas in relation to the conception and families. Broadly, it is taken to mean the sex of the person `at that time', which itself is unclear and can become a moving goalpost. A sex-change operation is not considered a positive right. Even if it were a right, it would be qualified by the respondent's right to determine priorities in the light of its limited resource.
Ageism is considered a significant area for the HR Act as life expectancy and quality increases. Traditional views on ageing and reproduction are increasingly being challenged. In the UK, Liz Buttle used donated oocytes and conceived at the age of 55 years. Most clinics offering IVF treatment have an age-related cut-off criterion. Whilst this is unlikely to affect most clinics who operate in the private sector, the NHS sector may face demands for fertility treatment. Increasing numbers of male patients with prostate cancers seek to store spermatozoa, and the current statutory limit of 10 years for the over-55 years age group, without recourse for extension, may be seen unnecessarily restrictive and discriminatory, thereby the potential for appeal under the HR Act under `Articles 2, 6, 8 and 12'. Similar dilemmas face children where fertility preservation by gonadal tissue sampling and preservation is either not routinely offered or is not recognized under the HFEA Act 1990 (Bahadur et al., 2000). When considering the question of whether to offer gonadal tissue sampling in pre-pubertal patients and storage, it should be noted that the Human Rights Act provides for the individual's right to found a family. Not to offer storage by denying choice at a later stage in life may thus infringe his/her right. Unique to children's gonadal tissue is that the HFEA Act 1990 does not allow for substituted consent (Bahadur et al., 2001). When the use of testicular tissue is to be considered in later years, difficulties are foreseen with regards to the HFEA Act 1990, as common law and parental consent would have previously been operational. Similar parallels are echoed with patients with mental incapacity in relation to informed consent, and Article 14 relating to discrimination is appropriate. Such considerations may also apply to the provision of gamete and embryo storage for HIV and hepatitis B and C patients. Potential adoptees who have undergone fertility-damaging cancer treatment also face discriminatory assessments.
A large part of the HFEA work relates to inspecting and licensing clinics for a variety of procedures, and these may now be opened to scrutiny. The HFEA for example, in deciding not to grant, revoke, vary or attach conditions to a licence, may have recourse to the HR Act by the licence holder if unsatisfactory decisions are not resolved. The level of immunity is likely to be lessened as public bodies are made accountable for their decisions by the HR Act.
Issues which have long been settled such as `sex selection' for social reasons, embryo transfer policy and embryo and gamete destruction could be rekindled. It is worth noting that sex selection using sperm separation or prelimplantation genetic diagnosis (PGD) is not illegal, but is regarded as unacceptable practice. This is because PGD is not specifically mentioned in the HFEA Act and therefore the limits of its use could not be defined by statute. The fact that the PGD procedure has to be carried out on an embryo necessarily brings the technique within the realm of the HFEA, and hence the ethical objection in disallowing this technique for `social reasons' and for testing `late-onset disease' such as breast and bowel cancers. Currently, one family plans to appeal under the HR Act for permission to choose a girl, to restore the `female dimension' of the family after their only daughter died in a fire (Riddle, 2000). Selecting embryos to cut our inherited disease using PGD has been established in the UK. However, in a recent case in the USA, a girl afflicted with Fanconi's anaemia and her inability to produce her own blood marrow led to a choice of a male embryo to help supplant stem cells in her. This case was widely regarded as being different as the child was `chosen to preserve the life of another'. While ethical debates face slippery slope prospects, the choice and power individual parents face increases, as the scope for interpretation under the HR Act takes on additional dimensions. If that was not enough, `reproductive tourism' is increasingly becoming a likely option for couples where a treatment might occur in another country as clinical standards become uniform. The HR Act declares that public bodies should not interfere with privacy or family life unless they can justify in terms of protecting public health or morals, or protecting the rights of others. It means that the HFEA cannot simply ban anything it considers ethically unacceptable. Under the HR Act, the HFEA would have to prove its right to infringe on people's choice and articulate quite precisely why it is interfering in terms of public health or morals. With this in mind, two cases involving 46- and 39-year-old women are likely to challenge the UK ban on more than three embryo IVF transfer policy, citing Articles 6, 8 and 12. A brother and sister will attempt to gain information about their genetic father, and the current law banning disclosure of information on donors is likely to be tested for breaches under Article 8 (Barwick, 2000
).
The fate of the liberal UK embryo research policy which allows the creation of a human embryo solely for a research purpose faces an interesting phase when compared with other European states. Research with embryos is presently limited to five categories: promoting advances in the treatment of fertility; increasing knowledge about the causes of congenital disease; increasing knowledge about the causes of miscarriage; developing more effective techniques of contraception; and developing methods for detecting the presence of gene or chromosome abnormalities in embryos before implantation. The third category might not find favour among individual members of the public, although no projects have appeared to date in this category (Human Fertilisation and Embryology Authority, 1999), while other categories such as the use of embryonic stem cells could be usefully added. The second category, which is concerned with gain of knowledge of a disease, rules out corrective genetic modifications in embryos or gametes for clinical use. With the recent application of gene therapy for a boy affected by a single defective gene of `severe combined immunodeficiency' (SCID) (Dobson and Leake, 1999
), technical, patient and legal interest is likely to focus on corrections at the early life stage such as the embryo. It may be possible for `pro-life groups' to disrupt the liberal embryo research policy under Article 2 (`everyone's right to life shall be protected by law').
Ethical objections which have been the springboard to deny novel treatment procedures are likely to be stretched and challenged using the Convention rights, especially where there exist inconsistencies or discriminatory application. With the HR Act, future ethical arguments will have to keep up with scientific development. The use of novel treatment procedures where research has not brought conclusive evidence, such as the use of round spermatids, early spermatogonia (of which haploid cells befitting HFEA gamete definition in pre-pubertal children can be had), the application of a post-HFEA Act 1990 definition of `gamete' is potentially troublesome, nuclear or cytoplasm transfer, PGD in late-onset disease or `designer practice', the use of embryo splitting where perhaps the final chance of fertility treatment is involved, may be subject to re-interpretation under the HR Act since the pace of development in reproductive techniques could not be envisaged when the HFEA Act 1990 was drafted. The transfer of an embryo created by cell nuclear substitution (`reproductive cloning') into a woman's uterus is a criminal offence in the UK. However, the present legal position is unclear on whether the intention is to prohibit production of another individual who is genetically identical or almost identical to another individual. For couples lacking germ cells it may become possible in future to having a genetically biparental child by creating haploid cells from somatic diploid cells, and two approaches involving meiotic reduction and tetraploid eggs respectively are suggested (Johnson and Kubiak, 2000). As developments are unforeseen and where meanings are unclear, it is possible for infertile couples or individuals to pursue their choice of conception through the HR Act.
In relation to the complex `status of the fetus and embryos', which have been intensely debated under different guises of law, morality and ethics, has often led to overall little conceptual depth. Further complications are added with the array of laws and approaches in existence: UK, European approaches, European Convention on Medicine, HFEA Act 1990 and now the HR Act. The central question has always been: When does life begin, and when does life acquire a `person' status with its `own right'? It might be easier to explore the fetal status first. In English law, a fetus does not have any right of its own. It is felt that the human being does not exist as a legal person until after birth, and it follows that it cannot be seriously argued that an embryo is a legal person. The embryo however, is widely given a measure of respect, although this is not absolute. The legal status of the non-classical embryo created using nuclear substitution and where no fertilization had occurredas in the creation of `Dolly' the sheeppresents a major new factor in our understanding of the meaning of an embryo. Such an `embryo' is not defined in the HFEA Act (1990).
Issues relating to the acceptability and scope of abortion rights have long been contentious in both domestic and international law. Abortion cases often form a test ground for the fetus, but the legal concerns also contain moral, political, religious and health-related elements. In the area of abortion, different opinions exist as to whether the authorization of abortion strikes a fair balance between the legitimate interests of the woman in question and the legitimate need to protect the fetus. In all abortion cases to date, the Commission has avoided making any pronouncements on the definition of `life' in the abortion context, or on the extent to which an unborn child may claim protection under Article 2 of the European Convention on Human Rights. In placing the mother before the fetus, it is possible to invoke Article 2 and the use of Article 8 could justifiably be used `for the protection of others'.
A safeguard has been written into the HR Act designed to make it harder to obtain a gagging order prior to publication. Article 10, protecting freedom of expression, will guarantee more rights for the media. In 1979, the `European Commission of Human Rights' came to the rescue of The Sunday Times preventing reports damning manufacturers for the effects of their drugs on unborn children (Waterhouse et al., 2000). Also expected to play its part under Articles 8 and 9 of the HR Act is that consideration be given to religious values, and in terms of reproductive issues polygamous marriage and childbearing also raise interesting issues. Although the right to form a family may be weak where a family does not already exist, an interesting precedent would arise should nulliparous women seek fertility treatment to reduce their risk of ovarian cancer.
In summary, it is only possible to speculate what might happen in relation to the HR Act, but what is certain is that UK law has changed radically to accommodate the requirements of the HR Act 1998. It should be noted that the HR Act is not intended to override British statute, but it will be for the courts to strike a balance. Broadly, it is public bodies that will be affected for greater accountability. Of relevance, the HR Act declares that public bodies should not interfere with privacy or family life unless they can justify in terms of protecting public health or morals, or protecting the rights of others. As such, cases are beginning to emerge which challenge the accessibility of free NHS fertility treatment, and the HFEA's Code of Practice such as the three embryo transfer policy, donor anonymity, interpretation of birthright status in posthumous assisted reproduction and sex selection. Prior to the HR Act, the rights did exist but cases had to be taken to Strasbourg's ECHR, involving lengthy procedures.
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References |
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Bahadur, G., Whelan, J., Ralph, D. and Hindmarsh, P. (2001) Gaining consent to freeze sperm from adolescents with cancer: legal, ethical and practical aspects. Hum. Reprod., 16, 188193
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Submitted on October 23, 2000; accepted on December 11, 2000.