Today, patients have an increasing range of reproductive choices and increasingly these ‘choices’ are phrased in terms of reproductive rights, particularly in the light of the Human Rights Act 1998 (McHale & Gallagher 2004). The nurse may play a direct part in guiding some of these choices, for instance the case of the teenager who approaches the nurse for advice regarding contraception, or the mother wondering whether her daughter who has learning disabilities should be sterilised. In others, the nurse may not be a direct participant in the process unless a patient specifically approaches her/him for advice. Nevertheless, it is important for the nurse to be aware of the legal framework within which these choices are made and clinical procedures are undertaken. This chapter begins with an examination of the legality of the provision of contraceptive services and the question of sterilisation of adults with learning disabilities. Second, we consider the regulation of the new reproductive technologies such as in vitro fertilisation (IVF) and the prospects for cloning. Third, the role of the law in regulating conduct during pregnancy is explored. Finally, the legality of abortion and the involvement of the nurse in the abortion process are discussed.
PROVISION OF CONTRACEPTIVE SERVICES
The nurse may be involved in providing contraceptive advice and treatment, whether as in a family planning clinic or in the hospital setting. Statute states that the Secretary of State for Health has a duty to meet reasonable requirements relating to the provision of contraceptive advice/treatment of persons in England and Wales (s5(1)b National Health Service Act 1977).
While in the past the legality of undertaking sterilisation operations for contraceptive purposes was questioned, today such operations are generally accepted to be lawful (Bravery v. Bravery [1954] 3 All ER 59 at pp. 67–68). As with any surgical procedure, before sterilisation is undertaken the patient’s consent must be obtained. Consent must be obtained from the patient him/herself. His/her spouse/partner has no rights to participate in the consent process and may not veto the operation. The implications of the operation and the fact that there is a possibility of failure are indicated on the NHS consent form, but these should also be drawn explicitly to the patient’s attention, otherwise there is the possibility that a negligence action will result (Thake v. Maurice [1986] 1 All ER 497).
One major point of controversy concerns the provision of contraceptive advice and treatment to teenagers. As seen in the section on children and confidentiality in Chapter 7, this issue came before the courts in the case of Gillick v. West Norfolk and Wisbech AHA ([1986] AC 150) and was confirmed in the recent Axon case (see Ch. 7). If a young girl approaches a nurse seeking contraceptive advice/treatment, the nurse must assess whether the girl has sufficient maturity to appreciate the nature of the advice/treatment sought and whether she is capable of making an informed choice.
Sterilisation and adults lacking mental capacity
A mother is worried that her daughter, who is in her early teens and has learning disabilities, is vulnerable to seduction. She believes that her daughter should be sterilised for her protection. She discusses her concerns with the district nurse who is helping her to care for her daughter. What should the nurse do?
Use of a ‘best interests’ test leaves much discretion in the hands of the courts. In Re D, D, an 11-year-old child from a poor background, suffered from Sotos’ syndrome ([1976] 1 All ER 326). This condition results in accelerated growth during infancy, epilepsy, generalised clumsy appearance, behaviour problems and certain aggressive tendencies. She had reached puberty and, while she had not shown any marked interest in the opposite sex, her protective mother was concerned about the consequences if she became pregnant. She wanted her daughter sterilised and her opinion was supported by her doctor.
Heilbron J. refused to authorise the sterilisation. She said that the evidence showed that there had been improvement in D’s mental and physical condition. Her future prospects were unpredictable. Nevertheless, it was likely that in the future she would be able to make her own choice. Should she then realise the impact of what had happened to her, she might feel frustration and resentment. The judge emphasised that a decision to undertake sterilisation for non-therapeutic purposes on a minor was not a matter for clinical judgment alone.
In cases following Re D the courts have, however, shown far less hesitation before authorising sterilisation. In Re B ([1987] 2 WLR 1212), B was a 17-year-old woman who had a mental age of 5–6 years and was epileptic. Evidence was given to the effect that she did not understand and was unable to learn the causal connection between intercourse, pregnancy and the birth of children. However, she had the sexual inclinations of a normal 17-year-old. It was claimed that there was only a 40% chance of establishing an acceptable regime with oral contraceptives and there would be side effects. Because she suffered swings of mood and had considerable physical strength, administration of a daily dose of medication might be impossible. B was also obese and this, coupled with the irregularity of her periods, might make early detection of pregnancy difficult. B’s mother and the local authority sought an order from the court authorising sterilisation. The court granted the order. Lord Hailsham said that the case was clearly distinguishable from Re D. He said:
Lord Templeman stated that in his opinion sterilisation of a woman under 18 years should only be undertaken with the leave of the High Court. In this case it would, he said, be cruel to expose her to an unacceptable risk of pregnancy. Lord Oliver also distinguished Re D. He said:
The decision of the House of Lords in Re B has been the subject of much critical comment. For example, Lee & Morgan (1989) have asked why B was able to manage the hygienic mechanics of menstruation but not contraception, and why she was able to understand the link between pregnancy and babies but not that between sex and pregnancy. Emphasis was placed in the case upon B’s mental age. But it has been suggested that this hides the complexity of the issue. For instance, a woman may have a mental age of 5 years in relation to some functions while at the same time having far higher comprehension levels in relation to other tasks. Reference was made in Re B to a Canadian case, Re Eve ([1986] DLR (4t) 1), in which the court had held that non-therapeutic sterilisation of a mentally incompetent adult was never justifiable. The House of Lords, however, disagreed and said that it was wrong to draw a distinction between therapeutic and non-therapeutic sterilisation. It is perhaps ironic in view of this that, as we shall see below, later courts appear to have drawn just such a distinction when considering whether all sterilisation operations should require judicial approval.
“To talk of a basic right to reproduce of an individual who is not capable of knowing the causal connection between intercourse and childbirth, the nature of pregnancy and what is involved in delivery, unable to form maternal instincts or to care for a child is to wholly part company with reality. (p. 216)
“the right to reproduce is only valuable if accompanied by the ability to make a choice and in the instant case there is no question of the minor being able to make a choice or indeed to appreciate the desire to make one. All the evidence indicates that she will never desire a child and that reproduction will be positively harmful to her.
There are perceptible advantages in the postponement of the sterilisation decision until a teenager with learning disabilities is older. Assessment of her physical and mental development may then be made on the basis of conclusive evidence, as opposed to guesswork. In B’s case there was some urgency in performing the operation before she reached her 18th birthday because at that time the legality of treatment of adults who lacked mental capacity was unclear. This issue was finally resolved 1989 by the House of Lords in Re F ([1990] AC 1) The House of Lords held that an adult woman lacking mental capacity could be sterilised if it was in her best interests, but it stated that it would be desirable for the medical team to obtain a declaration from the court before such an operation was undertaken.
The majority of the cases concern females however in Re A (Medical treatment: male sterilisation) ([2000] FCR 193), the Court of Appeal was asked to rule upon the sterilisation of a 28-year-old man with Down’s syndrome. He was assessed as borderline between significant and severe intelligence impairment. While incapable of making a decision regarding sterilisation himself, he was sexually aware and active. His mother supported his sterilisation. The Court of Appeal held that the sterilisation should not at present go ahead. Dame Elizabeth Butler-Sloss P. indicated that, at a time when there was soon to be direct application of the European Convention of Human Rights in English law, the court should be slow to take a step that may infringe the rights of those who are unable to act for themselves. The Court of Appeal emphasised that the patient’s best interests was something that was different from the interests of carers or others but left open the extent to which the interests of third parties should be weighed in the balance when determining what was in the patient’s best interests. It was noted that such a decision should not be authorised on eugenic grounds. Moreover a decision to sterilise a female patient involved different considerations and that in the context of a man there were no direct consequences other than the fact that he might contract a sexually transmitted disease.
The courts have indicated that sterilisation of an adult woman lacking mental capacity, undertaken for therapeutic purposes, such as the performance of a hysterectomy upon a woman suffering from extensive menstruation, does not require judicial approval (Re E (a minor) [1992] 2 FLR 585). Cases involving non-therapeutic sterilisation will, however, continue to be referred to the courts. It is important to ensure that such decisions are made on the basis of the woman’s best interests rather than what is convenient for the carers.
In a number of cases the courts, when authorising sterilisation, emphasised the possibility of surgical reversal of the sterilisation operation (Re P (a minor) (wardship: sterilisation) [1989] 1 FLR 182, [1989] Fam Law 102 and Re M (a minor) (wardship: sterilisation) [1988] 2 FLR 497). But as Brazier (1990) has argued, while leading experts may achieve a high level of reversals this does not mean that all clinicians can achieve this. Also, it is highly questionable whether an operation to reverse the sterilisation of an adult with severe learning disabilities will be a priority in a financially constrained NHS.
The nurse acting as patient advocate may play an important role, particularly in ensuring that, in those situations in which sterilisation has not been referred to the courts, it is being undertaken for therapeutic purposes and is in that patient’s best interests. In the future such decisions will be subject to the provisions of the Mental Capacity Act 2005, discussed in Chapter 5. The decision to go ahead with a sterilisation must be in the patient’s best interests. The Draft Mental Capacity Act Code of Practice 2006 provides that it is envisaged that ‘the proposed non-therapeutic sterilisation of a person lacking to capacity to consent (e.g. for contraceptive purposes)’ will be among the serious health-care decisions which will require judicial approval after the Act comes into force (Department for Constitutional Affairs 2006, para 7.17).
Developments in medical technology have, in the last half century, given much hope to the infertile. For example, a woman who is unable to conceive may receive IVF. This involves the egg being fertilised outside the womb and then implanted into it. But use of such techniques has not been free of controversy. In response to debate generated, the government established a committee, the Warnock Committee, to examine the use of new reproductive technologies. This Committee reported in 1984 (HMSO 1984). It recommended that use of these technologies be subject to regulation. Today, modern reproductive technologies are regulated by statute in the form of the Human Fertilisation and Embryology Act 1990. This Act established the Human Fertilisation and Embryology Authority (HEFA), whose functions include the licensing of clinics providing fertility treatment (s5 and schedule 1 Human Fertilisation and Embryology Act 1990; Lee & Morgan, 2001). It also grants licences for the conduct of embryo research. Not all forms of assisted conception must be licensed by the Authority, for example artificial insemination of a woman with her partner’s sperm. There are a series of limitations on what may be licensed. For example, human embryos may not be placed in an animal, nor can ‘cloning’ by cell nuclear replacement (where this amounts to replacing the nucleus of an embryo with the nucleus of another cell or embryo) be undertaken (s3(3)). Attempts to create ‘designer babies’ are subject to regulation.
A right to access to assisted reproduction services?
The Human Rights Act 1998 provides recognition for reproductive rights in Article 8, the right to privacy of home and family life, with its scope for safeguarding autonomy-based interests, and also in Article 12, the right to marry and to found a family. These rights, however, are not absolute in nature and are qualified by public interest considerations. The courts have confirmed that there is no automatic right of access to reproductive technology services (R (Mellor) v. Secretary of State for the Home Department [2002] QB 13.) A woman seeking access to IVF would have to satisfy the clinic that she was a suitable case for receiving such treatment. Her eligibility is determined by reference to criteria set out in the code of practice produced by the HEFA (Human Fertilisation and Embryology Authority 2004) and this is in turn structured by the Human Fertilisation and Embryology Act 1990. Section 13(5) provides that:
In addition to the child’s need for a father, the Code of Practice directs them to consider the applicants’ medical histories and their commitment to bringing up children (Human Fertilisation and Embryology Authority 2004). That does not mean that single women would be precluded from access to infertility treatment, but the clinic would scrutinise the application and determine whether there would be any male influences in the child’s upbringing. Criteria imposed by individual clinics include restrictions by reference to the age of the woman seeking treatment. Many clinics do not allow women over 35 years of age access to infertility treatment on the grounds that the success rates of treatment on older women are limited. Debates have also centred around access to IVF services for gay and lesbian couples. The HFEA Code of Practice does give a considerable degree of discretion to clinics in determining who they accept for treatment. Recently the current chair of the Human Fertilisation and Embryology Authority, Dame Suzie Leather, has suggested that section 13(5) as currently drafted can be seen as outdated in today’s society, with different conceptions of what constitutes a family relationship. The House of Commons Science and Technology Committee recommended its abolition, commenting that ‘it discriminates against the infertile and some sections of society, is impossible to implement and is of questionable practical value in protecting the interests of children born as a result of assisted reproduction’ (House of Commons Select Committee on Science and Technology 2005, para 107).
“s. 13 (5) A woman shall not be provided with treatment services unless account has been taken of the welfare of any child who may be born as a result of the treatment (including the need of that child for a father), and of any child who may be affected by the birth.
Although they recognised that there should be some checks and balances there should be a ‘minimal threshold principle’ which should be ‘the risk of unpreventable and serious harm’ (House of Commons Select Committee on Science and Technology 2005, para 101). As we shall see below, this provision is currently under consideration as part of the Department of Health’s consultation exercise on the HFEA (Department of Health 2005).
While there is the potential for persons denied access to IVF services to challenge this refusal in the courtroom, in practice such challenges are unlikely to be successful. For example, in R v. Ethical Committee of St Mary’s Hospital, Manchester ([1988] 1 FLR 512), R was unable to conceive. Her appliation to adopt a child had been rejected because of her criminal record relating to prostitution and brothel keeping. She sought IVF treatment. A consultant at the IVF clinic rejected her application. This decision was supported by the hospital’s infertility ethical committee. (Bodies undertaking infertility treatment must establish ethical committees to which problematic decisions relating to access to such treatments may be referred.) Schiemann J. said that the committee was in essence an informal body. If the committee in a particular case refused to give advice to a consultant or did not come to a majority view on a decision, he didn’t see that the court could compel it, either to give advice or to enter into a particular investigation. Schiemann J. did not rule out the possibility of judicial review:
But he stressed that the committee was a talking shop for professionals and a court should be cautious before intervening. It appears that such challenges are unlikely to be successful in the future unless they are manifestly unreasonable/indefensible. This was illustrated in the later case of ex parte Seale (1994 unreported). S, a 36-year-old woman, was denied IVF treatment. It was said that there was a need to ration resources and treatment was generally less effective in those women who were over 35 years of age. The court was not prepared to overrule the clinic’s decision to refuse her treatment on the basis that it was irrational.
“If the committee had advised, for instance, that the IVF unit should in principal refuse treatment to anyone who was a … Jew or coloured, then I think that the court might well grant a declaration that that was illegal.
The ‘consent’ principle and reproductive rights
The Human Fertilisation and Embryology Act 1990 is rooted in the principle of consent to use stored sperm, eggs and embryos. In the case of stored embryos, consent is required from both parties who provided the gametes – consent from one is not sufficient. But what if one party claims that by refusing consent the other is stopping them from ever reproducing in the future? Is there a right to reproduce even in the face of the opposition of a woman’s ex-partner?
This issue arose in the case of Evans v. Amicus Health Care ([2004] 2 FLR 767). It concerned a dispute over a stored embryo between women and their former partners. The embryos had been created from the women’s eggs and their former partners’ sperm. Both women wanted to use the embryos while their former partners were opposed. In the case of one of the litigants, Natalie Evans, she was unable to have any more genetically related children following her treatment for ovarian tumours. The other woman, Mrs Hadley, had difficulties conceiving but the chances, while remote, did not render it impossible. Their claim was rejected in the English courts. At first instance Wall J. held that the Human Fertilisation and Embryology Act 1990 was quite clear that consent was required from both parties in relation to stored gametes. Furthermore he also rejected her challenge on the basis of the provisions of the European Convention of Human Rights. It was claimed that the embryos were protected under Article 2 of the ECHR – which safeguards the right to life. This claim was rejected. It was held that, given that a right to life was not afforded to the fetus, it was difficult to see how an embryo could be granted such a right. Although he recognised that Article 8 rights were engaged here, so too were those of the ex-partner. Interference with a person’s private life must be necessary and proportionate and this was a case in which the courts were prepared to award a generous margin of appreciation. Regarding Article 12 of the ECHR which provides that there is a right to marry and found a family it was held that this either wasn’t engaged here or if it was the interference was justifiable. It was also argued that the refusal of the claim to use the embryos contravened Article 14 – the prohibition on discrimination – because the argument was made that they were being discriminated against because of their inability to conceive. However it was held that the 1990 Act did not distinguish between women on the basis of disability; rather it distinguished on the basis of those who had changed their minds regarding the decision to go ahead with IVF treatment. Wall J. rejected the argument that a woman whose egg was used to create an embryo that was frozen and then stored was in the same position as someone who was pregnant without the use of modern reproductive technologies and who wanted to continue with the pregnancy despite the opposition of her partner.
The approach of Wall J. was confirmed by the Court of Appeal. Mrs Hadley decided not to take her claim further; however, Ms Evans took her case to the European Court of Human Rights (ECHR) in Strasbourg but again was unsuccessful (Evans v. UK 2006). The ECHR upheld the approach taken in the English courts. The case illustrates the difficulties in attempting to use what are essentially very broad brush human rights principles to determine complex issues of policy and conflicting rights.
The question of posthumous conception arose in the case of Diane Blood, who wanted to be artificially inseminated with her deceased husband’s sperm (R v. Human Fertilisation and Embryology Authority ex parte Blood [1997] 2 All ER 687). The HFEA refused to allow the treatment to go ahead because they stated that the treatment was not sanctioned under the 1990 Act because the Act required that prior consent be obtained from her deceased husband for use of the sperm after death. However this refusal was subject to challenge using European law principles. The Court of Appeal held that the HFEA had failed to take into consideration the application of European Community law and in particular the free movement principles, and referred the decision back to the HFEA to reconsider their decision. The HFEA ultimately exercised their discretion and allowed the sperm to be exported to Belgium, where Diane Blood was treated and ultimately gave birth to a son.
The Blood case is instructive as it illustrates the difficulty of effectively regulating reproductive services on a single jurisdictional basis. Individuals denied treatment in the UK because, for example, they are considered unsuitable for treatment whether through age or because a particular controversial procedure such as sex-selection is not available, may ultimately simply bypass national restrictions and go overseas for treatment. A recent illustration of this was in May 2006 when it was announced that a 63-year-old English psychiatrist was pregnant, having travelled abroad to receive treatment in Romania and becoming potentially the oldest mother to give birth in the UK.
The code of practice issued by the HFEA provides that couples contemplating use of reproductive technologies should be given counselling as to the implications of undertaking such therapy (Human Fertilisation and Embryology Authority 2004, Ch. 6). The nurse may be involved in such counselling.
Conscientious objection
A nurse may object on religious or cultural grounds to participation in the use of certain techniques, such as IVF, that involve gamete or embryo manipulation. Section 38 of the 1990 Act gives nurses and other health professionals the right to refuse to participate in such treatments by expressing a conscientious objection to participation.
Cloning
One of the most heated recent debates in relation to the use of new human reproductive technologies has arisen in the context of cloning. In 1997 Ian Wilmut cloned Dolly the sheep at the Roslin Institute in Edinburgh. Cloning involves various techniques. One such technique is ‘embryo splitting’. This is the replication of the process that occurs naturally and leads to the production of twins. Embryonic cells are separated at a very early stage before they have had a chance to differentiate. Another method is that of nuclear replacement.
Following Dolly, a House of Commons Select Committee on Science and Technology was established. Its report was published in March 1997. It proposed that Parliament should confirm a ban on reproductive cloning. It also proposed that the ‘creation of experimental human beings’ should not be sanctioned. This was supported by the Minister of State for Health in June 1997.
There are a number of reasons why there has been opposition to cloning; first, the fact that it is a costly technology and one that is likely to lead to considerable wastage of eggs and a high degree of risk. Dolly was the only normal lamb that was born from 276 similar attempts. In only 29 cases did they lead to implantable embryos and all of these except Dolly resulted in defective pregnancies and grossly deformed births. Other concerns relate to the life expectancy of the clone, which may be reduced as a result of the fact that a clone could be born prematurely aged because its genetic material would already be as old as the person from whom it had been removed. Some concerns have also been expressed that that cloning might produce resultant health defects. In 1999 a 2-month-old cloned calf died after it developed blood and heart problems (British Medical Journal 1999). Moreover, the clone may be born with a reduced life expectancy. Numerous ethical and social issues have also been identified. It has been suggested that cloning may amount to using individuals as means to end and as such is wrong. Could cloned children in effect be regarded as commodities? Human rights/dignity might be infringed by the prospect of there being two or more persons in existence with an identical genetic composition. However, it has been argued that nature provides for monozygotic twins, which have identical composition. Clones would also not be identical. It has also been suggested that a clone would not be identical to the individual from which it was cloned because this does not take into account social, cultural and environmental issues, which play a very important part in an individual’s development (Harris 1998)
There has been considerable opposition to reproductive cloning. Warnock was of the view that it should not be permitted. In introducing the report of the Human Genetic Advisory Commission and the Human Fertilisation and Embryology Authority, Sir Colin Campbell stated that ‘We want to stop the wild and irresponsible notion of cloning whole human beings but allow procedures that in 5 to 10 years time may lead to the curing of diseases’. Ruth Deech, the chair of the HEFA, suggested that:
At the same time as the UK debate was being undertaken the international response to cloning has been hostile. In January 1998, 19 members of the Council of Europe signed an agreement in Paris to the effect that it prohibited ‘any intervention seeking to create a human being genetically identical to any other human being, whether living or dead, by whatever means’. In 1998 the European Union called upon member states to ban cloning.
“The Human Fertilisation and Embryology Act 1990 empowers the HEFA to forbid human reproductive cloning in the UK and we have no intention of changing our minds on that decision. Nevertheless the government may wish to consider the possibility of legislation explicitly banning reproductive cloning.
Cloning has been seen by some as constituting a serious violation of human rights, as contrary to principle of equality, permitting eugenic and racist selection and offending against human dignity. In July 1999 the UK government confirmed that in their view human reproductive cloning was ethically unacceptable. However, an advisory group chaired by the Chief Medical Officer supported the development of stem cell cloning technology (Chief Medical Officer 2000). Stem cells are the master cells of the body, which have the ability to develop into any cell type. Cloning through stem cell technology gives rise to the prospect of cures for a wide-range of conditions. It also raises the prospect of growing tissue and organs using the genetic material from the person it is intended to transplant the organ into, which reduces the prospect of rejection. Following this report the government enacted regulations that extended the purposes for which the HFEA could approve embryo research projects to include stem cell cloning (Human Fertilisation and Embryology Research Purposes Regulations 2001 SI No 188). The decision by the HFEA to license cloning for therapeutic purposes was subject to challenge by a pro-life group, CORE – Comment on Reproductive Ethics (R (ex parte Quintavelle) v. Secretary of State for Health HL [2003] 2 All ER 113). The issue was whether cloning through cell nucleus transfer – the technique used in relation to Dolly the sheep – was regulated by the legislation. It was argued that it was not and that this technique fell outside the Act. CORE won at first instance. Panic ensued – the consequence of the decision was that some types of cloning were not banned by the 1990 Act nor were they capable of being regulated by the HFEA. There was thus the prospect that someone might try and clone a human being. This issue was resolved by the government rapidly passing the Human Reproductive Cloning Act 2001, which now clearly places a legislative ban on undertaking reproductive cloning. On appeal, the courts overturned the decision at first instance and construed the legislation to enable regulating of stem cell cloning. Nonetheless, this decision was controversial and in many ways can be seen as the court stretching the law to ‘fit’ a difficult issue through the use of purposive interpretation. This in itself is controversial, and indeed it can be argued that, if the law is not really capable of dealing with new ethical dilemmas, this should be a matter for Parliament rather than individual judges to determine.