ANSWERING POINT 1(B)

"whether a scientific or medical definition of serious abnormality is required or desirable in respect of abortion allowed beyond 24 weeks"

EXECUTIVE SUMMARY

  1.  The lack of a definition of "serious abnormality" has led in recent years to the termination of several pregnancies because of quite trivial abnormalities. This was not the intention of those responsible for the Abortion Act, but the medical profession has failed to enforce its own guidelines on the assessment of handicap. It falls to parliament to provide concrete definitions.

  2.  The past forty years have seen considerable developments in neonatal and paediatric care for disabled children that means commonly occurring foetal abnormalities now cause less serious disability. The life expectancy and the quality of life of disabled people have risen considerably since 1967, which must be recognised as the law is reviewed. Also, as prenatal genetic diagnosis will increasingly warn parents that their child is predisposed to developing certain common medical conditions, it is vital parliament decides which set of genes may truly be said to constitute a significant risk of serious handicap.

  3.  Currently it falls on two doctors alone to assess a foetus's future level of disability, leading to an unacceptable risk of subjective decision making. These decisions should be made by parliament, where all concerned can assess the true implications of the birth of a disabled child on the child itself, the child's family and society as a whole. Openness and justice in making such decisions is essential, particularly given the effect the selective termination of disabled foetuses has on how disabled members of society are viewed.

Recommendation

  For section 1(1)d of the Abortion Act to remain in place it is therefore essential that a full evidence-based review is carried out by parliament to work towards a robust definition of the level of disability deemed to render a foetus worthy of termination. However the committee should also give serious consideration to completely removing section 1(1)d from the Act, and according disabled foetuses the same legal protection as those that are able-bodied.

1.  THE FAILURE OF CURRENT GUIDANCE TO DOCTORS ON "SERIOUS ABNORMALITY"

Current guidance

  1.1  The Abortion Act does not define the term "serious abnormality", and the interpretation of the phrase has never come before the courts. Both the BMA[153] and the Royal College of Obstetricians and Gynaecologists[154] (RCOG) have issued guidance on factors that should influence individual decisions, such as the possibility of effective treatment, whether in utero or after birth; or the probability of the foetus growing into an independent and self-supporting adult. Beyond these guidelines it is left to the discretion of individual doctors involved in the case to determine the severity of abnormalities.

The original intent of section 1(1)d

  1.2  In leading the 1990 review of the Abortion Act, Baroness Warnock (chair of the Human Fertilisation and Embryology Authority), said that section 1(1)d should refer to "a child who is very severely damaged and cannot lead a meaningful life".[155] During the consultation on the Act, two concerned lawyers sent out an open letter to all MPs arguing that a healthy foetus at greater than 24 weeks gestation could be legally aborted for having a "hare lip or a cleft palate". MPs expressed their horror at such an abuse; David Steele described the letter as a "gross calumny on the medical profession", and Harriet Harman said the authors should be reported to the Bar Council.[156]

Challenges brought against abortions under section 1(1)d

  1.3  Yet in 2001 a foetus was aborted for bilateral cleft lip and palate at 28 weeks gestation at a hospital in Hertfordshire, a decision that Joanna Jepson, a trainee curate, asked the police to investigate.[157] Jim England of the Crown Prosecution Service declined to prosecute the two doctors involved because he was satisfied that they had decided in good faith that the child, if born, would be seriously handicapped.[158]

1.4  Such a termination does not represent the intended use of ground E of the Abortion Act. It also contravenes the guidelines set out by the RCOG and BMA. Such a condition is completely treatable, does not affect self-awareness or the ability to form relationships, does not prevent living independently of others, causes very little suffering for either the child or its parents, and such children would clearly receive aggressive neonatal resuscitation if required. However in response to the incident, the vice-president of the RCOG, Miss Heather Mellows, seemingly in contravention of the college's own guidelines, defended the doctors in question and reaffirmed that such decisions were for the "practitioner to make in consultation with the parents and other interested parties".[159]

Other conditions not meeting RCOG guidance

  1.5  In the decade from 1996 to 2006 there have been 20 abortions for clubbed feet, all taking place at after 20 weeks gestation.[160] This condition can always be successfully cured, in the majority of cases merely by physiotherapy; the winner of the 1992 Olympic gold medal for women's figure skating was born with two clubbed feet.[161] Other minor abnormalities that also resulted in termination in this period include webbed fingers and extra digits.[162]

  1.6  Klinefelter syndrome is a chromosomal abnormality where sufferers have an extra X chromosome. 58% of parents choose to terminate affected pregnancies if diagnosed prenatally.[163] The condition results in subfertility along with various other mild phenotypic traits (such as tall stature, long arms and sparse body hair), but a normal life expectancy.[164] Many Klinefelter syndrome males are sufficiently asymptomatic as to be unaware of their status until undergoing testing for infertility.[165]

The need for more concrete guidance

  1.7  Medicine as a profession is granted considerable autonomy from government control in exchange for self-regulation. Thus, it is the GMC and the Royal Colleges that set and enforce standards for good clinical care. This autonomy is threatened by incidents where self-regulation is seen to fail, and in such cases the profession finds itself under pressure to accept direct governmental regulation.

  1.8  The incident above and the response by the RCOG shows that the guidance offered to doctors over the assessment of serious handicap is either hopelessly too vague or is simply not being enforced. Either way, the medical profession has failed to self-regulate on this issue, acting contrary to the intentions of those who were responsible for the original legislation and contrary to its own stated guidance. In view of this it falls to parliament to retake control of this difficult issue and form a definition of serious handicap that will direct the medical profession in such cases.

2.  THE DECREASING LIKELIHOOD THAT PHYSICAL OR MENTAL ABNORMALITIES WILL LEAD TO SERIOUS HANDICAP

Treatment options

  2.1  The steady improvement in neonatal intensive care and paediatric surgery has led to many structural abnormalities that previously would have been fatal now being considered completely curable. Several years ago a stir was created after a woman at 35 weeks gestation was recommended to have a selective termination of one of her twins because of a cardiac abnormality, which she was later advised could be corrected though an operation with an 85% success rate.[166]

  2.2  Many phenotypic features of Klinefelter's syndrome can be reduced by testosterone therapy, and some trials have even shown success in using advanced fertility treatment to allow those affected to father children.[167] Down's syndrome, the single most common reason for termination under ground E of the Abortion Act, is now far better understood. With aggressive treatment of cardiac abnormalities many of those affected survive well into their fifties and sixties.

  2.3  Many of the conditions for which foetuses are aborted under ground E of the Abortion Act remain significant causes of handicap, with treatment proving ineffective or of very little benefit. However, the examples cited above show that for an equally large group of conditions, treatments exist which greatly decrease handicap and increase both quality and quantity of life. It is vital that these therapeutic options are reviewed when considering the actual level of disability experienced by those affected.

Better care for the disabled

  2.4  The days when "imbeciles" were condemned to asylums and abandoned by society are mercifully now in the past. The Disability Discrimination Acts of 1995 and 2005 commit society to promoting the civil rights of disabled people and fighting discrimination against them. It is now mandatory for disabled people to have barriers removed in accessing education, employment, public transport, public facilities and other services, and to have equal rights in buying land or property.[168] Such legislation, and the changes that follow in the provision of ramps, disabled toilets, large print documents or disabled parking spaces, all serve to reduce the level of handicap faced by those with a disability and to improve their quality of life.

  2.5  An increased awareness of the challenges of caring for children with disabilities mean that families including such children receive considerable help from local authorities. The help may be financial, through social services, by the offer of child-minding, or it may involve the provision of respite care to allow parents time to recuperate. Many children with Down's syndrome are now catered for in mainstream schools, and can lead happy and fulfilled lives, achieving high levels of independence.[169]

  2.6  It is essential that parliament considers carefully the range of conditions currently viewed by some as causing serious handicap, and consider their potential for cure, treatment and amelioration.

Advances in prenatal diagnosis

  2.7  According to a 2000 report by the governement's Advisory Committee on Genetic Testing, "at each pregnancy, bearing in mind advances in technology and knowledge, women should be offered information on prenatal genetic tests appropriate to their individual risk factors".[170] Our understanding of the genetic basis of disease is constantly expanding, meaning that we will increasingly be able to test foetuses for genes that cause a predisposition to develop certain conditions. Genes have already been discovered that are linked to such common medical conditions as type II diabetes,[171] obesity,[172] Alzheimer's disease[173] and many cancers.[174]

  2.8  For instance, patients with the HLA B27 gene carry a substantially increased risk of developing ankylosing spondylitis, inflammatory bowel disease and some forms of psoriasis[175] —all chronic, disabling conditions. Technology is already available for prenatal HLA screening.[176] If a foetus was to be found to carry HLA B27, it could easily be argued that there was "a substantial risk that if the child were born it would suffer from such physical or mental abnormalities as to be seriously handicapped".[177] Should such tests also become available for genes linked to common medical conditions such as diabetes, obesity, heart disease or forms of cancer, the number of pregnancies affected by foetal genotypes potentially carrying risk of significant subsequent handicap would be dramatically increased. For this reason it is vital that public consensus be gained now on what constitutes significant handicap, since the development of prenatal genetic testing promises to raise major challenges in this area in the future.

  2.9  Our understanding of disease has moved on a long way since 1967. It is very clear that none of us are genetically "normal'—we all carry in our DNA the predisposition towards various diseases. However, the ability of society to treat and care for those suffering from the disabling effects of disease has also never been greater. What is essential is that society decides which genetic or structural abnormalities will lead to serious handicap, and uses such knowledge to guide prenatal screening programmes.

3.  THE NEED FOR OPENNESS AND JUSTICE IN DECISIONS CONCERNING HUMAN DISABILITY AND RIGHT TO LIFE

Who decides?

  3.1  The decision to terminate a pregnancy affected by foetal abnormality has huge implications for the mother, and so her consent is vital for a termination to be undertaken. However any such decision also has implications for society—the law has decided that viable foetuses (those of more than 24 weeks gestation), have a legally protected status that can be superceded only by the risk that the child, if born, would be seriously handicapped.

  3.2  Currently the two doctors who sign the abortion consent form represent the interests of the whole of society in protecting foetuses that are not seriously handicapped. For the reasons outlined below, these arrangements are insufficient to protect society's decision, and it is essential that parliament clarifies exactly what constitutes a risk of serious handicap.

The subjectivity of evaluation

  3.3  It is clear that the decisions each of us make will be informed by our own personal views of the world, by different responsibilities we may have or by ways in which we may gain from particular outcomes. According to a BMJ editorial on the subject, conflicts of interests are "a condition, not a behaviour",[178] are inevitable and are not at all morally reprehensible.

  3.4  The doctor who has a disabled child themselves may decide whether or not a handicap is severe in quite a different way from a doctor who sits on the hospital board and is concerned about the amount of expenditure on paediatric services. Likewise two doctors may decide quite differently on whether an abnormality is severe if one of them has strongly pro-life views and the other strongly pro-choice. Neither is morally compromised by their position—however, as the BMJ editorial mentioned above concluded, "transparency is the key". Currently decisions are simply left to the discretion of individual doctors, and so such decisions are carried out privately, away from public scrutiny. Issues of such magnitude in which the public has a clear interest should be decided openly in a forum where the views of everyone can be heard, not simply the views of three individuals.

Economics and healthcare rationing

  3.5  One argument given in favour of the termination of seriously handicapped foetuses is essentially economic—that such individuals place considerable burdens on an already over-stretched health service (and often do not become financial contributors to society to repay these costs). "Therapeutic abortion" may be viewed as being preferable to the burden on services that these children will represent.

  3.6  Even if there are no moral objections to financially-driven destruction of foetal life, there are still problems with abortion being used in this way to reduce burdens on services. Decisions about healthcare rationing are inevitable, but must be made in the public arena where all members of society can contribute to the debate. An evidence-based review must be undertaken, to assess the relative costs of caring for different types of congenital disability, against the costs of diagnosis and termination of affected foetuses. Such a review could be used to define "serious handicap" in purely economic terms, which though morally problematic is essential if arguments about healthcare costs are to be adequately assessed.

Effects of disability on individuals and families

  3.7  Abortion for foetal handicap is often justified on the basis of the alleviation of suffering, either for the individual affected or for the family who will have to care for them.

  3.8  Tom Shakespeare is a research fellow at Newcastle University who was born with the genetic condition achondroplasia, leading to severe limb abnormalities. Although defending abortion in general, he greatly opposes the special case made for abortion due to foetal handicap. Speaking about those with profound learning difficulties, he argues that "just because a person is unable to articulate their views and concerns clearly does not mean that their life isn't worth living".[179]

  3.9  The suicide rate in Down's syndrome sufferers is significantly lower than that in the general population.[180] According to their website, "The Down's Syndrome Association does not consider Down's syndrome a reason for termination. People with Down's syndrome can and do lead full and rewarding lives".[181] The love that they are shown, and that they can return to their carers, in the words of one commentator brings good from evil "like the grit in the oyster that causes a pearl to form.[182]

  3.10  Caring for a disabled child is challenging for families. Common parental reactions to a diagnosis of long-term disability in their child include sadness, guilt and anger. However, research shows that the divorce rate amongst parents of disabled children is no higher than that in the general population.[183] Siblings of children with Down's syndrome generally get on well with their disabled brother or sister. They are fond of them, not embarrassed to introduce them to their friends, and often become more caring individuals than they were previously, according to their parents.[184]

  3.11  Disability and handicap must not be assumed to lead to a quality of life which is not worth living. The views of disabled people on their quality of a life are far more pertinent in making such choices that the views of the two doctors who currently decide.

Negative effects of abortion for handicap

  3.12  Abortion cannot wind back the clock. Instead of facing the problems of bringing up a disabled child, women may face long term psychological ill health. One follow-up trial found that, two years afterwards, 20% of women who had aborted their foetuses because of handicap still experienced regular bouts of crying, sadness and irritability.[185] Personal anecdotes of those in this position that were collected for another study are harrowing: "when we went to the parents" support group the other couples said they blamed themselves for not being strong enough to deal with an abnormal child. When they said this, it was like a dagger through my heart, because I knew it was true for me, too. I cried for two solid days, but I had to face my guilt. Those feelings are there, and if you don't get them out, they eat away at you".[186]

  3.13  Abortion for handicap may also have larger impacts on society, with disabled people particularly sensitive to what they feel it says about their value. As Tom Shakespeare points out, "it is very difficult to support a practice which would have prevented one's own existence".[187] At a 1998 workshop on abortion, unexpected agreement was reached between Ann Furedi, now of Abortion Rights, the pro-choice charity; and Helen Watt of the Society for the Protection of the Unborn Child. Both were agreed that the law should not treat disabled and able-bodied foetuses differently—Watt arguing that abortion law should be greatly curtailed across the board, and Furedi that women should be able to abort up to term for any reason they choose.[188] The mere existence of section 1(1)d requires serious review since it seems to draw a line between the moral worth of foetuses based solely on their level of disability.

  3.14  A definition of serious abnormality is absolutely necessary because of the implications abortions may have on women, their families and on society more generally. These costs must be offset by a sufficient benefit in terms of handicap reduction before and such procedures can even be considered.

CONCLUSION

  At the heart of the debate about the termination of handicapped foetuses lies a question of value: based on what criteria do we assess the value of disabled human life? Opinions range from those who view all human life as sacred regardless of its physical and mental capacity,[189] through to those who view some handicaps as being of such great severity that they are willing even to sanction the destruction of babies in their first few years of life.[190]

  It is crucial that parliament defines serious handicap in a way based on evidence from scientists, doctors, disabled people and others in society who wish to contribute. The implications for disabled people makes such a decision far too important to be decided simply by two doctors and a pregnant mother. Either section 1(1)d must be scrapped altogether, as unnecessary and discriminatory, or we must decide together which conditions provide so serious a level of handicap as to render such lives unwanted by society.

September 2007

154   Royal College of Obstetricians and Gynaecologists. Termination of pregnancy for fetal abnormality in England, Wales and Scotland. London: RCOG Press, 1996: para 3.3.3. See also Royal College of Obstetricians and Gynaecologists. A Consideration of the Law and Ethics in relation to Late Termination of Pregnancy for Fetal Abnormality (Report of the RCOG Ethics Committee). London: RCOG Press, 1998:16.  Back

155   http://comment.independent.co.uk/columnists_a_l/dominic-lawson/article570210.ece Back

156   http://www.telegraph.co.uk/opinion/main.jhtml?xml=/opinion/2005/03/20/do2001.xml Back

157   http://news.bbc.co.uk/1/hi/england/2367917.stm Back

158   Dyer C. Doctors who performed late abortion will not be prosecuted. BMJ 2005;330:688 Back

159   http://webjcli.ncl.ac.uk/2004/issue4/grear4.html Back

160   http://www.timesonline.co.uk/tol/news/uk/article669212.ece Back

161   http://www.bookrags.com/biography/kristi-yamaguchi-spo/ Back

162   http://www.timesonline.co.uk/tol/news/uk/article669212.ece Back

163   Mansfield C, Hopfer S, Marteau TM, Termination rates after prenatal diagnosis of Down Syndrome, spina bifida,anencephaly and Turner and Klinefelter syndromes: a systematic literature review. Prenat Diagnosis 1999; 19 (9):808-12 (September). Back

164   http://www.antenataltesting.info/conditions/klinefelters/klinefelt_faq.htmlreduced-life Back

165   http://www.ksa-uk.co.uk/Introduction.htm Back

166   Rogers L. Doctors revolt over last-minute abortion of twin. The Sunday Times 2002; 10 November. Back

167   Denschlag, Dominik, MD; Tempfer, MD Clemens & Myriam, MD Kunze et al. (October 2004), "Assisted reproductive techniques in patients with Klinefelter syndrome: A critical review", Fertility and Sterility 82 (4): 775-779. Back

168   http://www.direct.gov.uk/en/DisabledPeople/RightsAndObligations/DisabilityRights/DG-4001068 Back

169   http://www.downs-syndrome.org.uk/DSA-NewParents.aspx Back

170   Advisory Committee on Genetic Testing, Prenatal Genetic Testing, Report for Consultation, 2000, available at http://www.dh.gov.uk/prod_consum_dh/groups/dh_digitalassets/@dh/@en/documents/digitalasset/dh-4014675.pdf Back

171   http://news.bbc.co.uk/2/hi/health/6342855.stm Back

172   http://itn.co.uk/news/cdc0a932339b395291bc1871603b7237.html Back

173   http://news.bbc.co.uk/1/hi/wales/1081169.stm Back

174   http://www.guardian.co.uk/science/story/0,,2028719,00.html Back

175   http://www-ermm.cbcu.cam.ac.uk/9900112Xh.htm Back

176   van den Berg H, Verjaal M, Boer K, Lardy NM, Prenatal HLA-matching to determine suitability for allogeneic bone marrow transplantation, Bone Marrow Transplantation 2000; 25 (6):579-582. Back

177   Abortion Act 1967. Section 1 (1) (d). Back

178   Smith, J. Beyond conflict of interest. BMJ 1998; 317:291-292. Back

179   Shakespeare T. Choice and rights: eugenics, genetics and disability equality. Disability and Society, 1998; 13, 5: 665-682. Back

180   Pary R J. Does suicidal behavior occur in persons with Down's syndrome? Habilitative Mental Healthcare Newsletter 1966;15:59-60. Back

181   http://www.downs-syndrome.org.uk/DSA-detStatement.aspx?st=11 Back

182   Goodall, J. The pearl effect. Triple Helix, Winter 2003:10-11. Back

183   Goodall J et al. Do disabled schoolchildren disable a marriage? Maternal and Child Health 1993; May:151-159. Back

184   http://www.downs-syndrome.org.uk/DSA-NewParents.aspx Back

185   Marteau T, Anionwu E. Testing adults. In Marteau T & Richards M (Eds), The Troubled Helix, (Cambridge, 1996), 134. Back

186   Kohn I, Moffit P. Pregnancy Loss, A Silent Sorrow (London, 1994): 116-117. Back

187   Shakespeare T. Choice and rights: eugenics, genetics and disability equality. Disability and Society, 1998; 13, 5: 665-682. Back

188   http://www.prochoiceforum.org.uk/aad5.asp Back

189   http://www.spuc.org.uk/about/ Back

190   Costeloe K Euthanasia in neonates. BMJ.2007; 334: 912-913. Back