A Discourse Analysis of the 2015 House of Commons Debate for Mitochondrial Replacement Therapy in the UK

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1. Candidate Number: W09855 7SSHM618 Cri:cal Policy Research for Health and Medicine A Discourse Analysis of the 2015 House of Commons Debate for Mitochondrial…
  • 1. Candidate Number: W09855 7SSHM618 Cri:cal Policy Research for Health and Medicine A Discourse Analysis of the 2015 House of Commons Debate for Mitochondrial Replacement Therapy in the UK Final Essay MA Bioethics & Society April 28, 2016 Word Count: 2,996
  • 2. Introduc)on In February 2015, the UK Parliament approved regula:ons draQed by the Human Fer:lisa:on and Embryology Authority (HFEA) for the legal implementa:on of mitochondrial replacement techniques (MRT) in UK fer:lity clinics. The techniques would be used in conjunc:on with in vitro fer:liza:on (IVF) to prevent parents with mitochondrial disease from passing the disease to their children. It took five to six years of scien:fic research, ethical review, and expert and public consulta:on to draQ the HFEA regula:ons, as no country in the world had yet approved use of these new and controversial techniques. Stakeholders who supported the HFEA regula:ons included families with mitochondrial disease, and organiza:ons such as the HFEA and The Lilly Founda:on (Lily), a UK-based mitochondrial disease research charity, who represented these families with mitochondrial disease. Stakeholders who opposed the HFEA regula:ons included members of the public opposed to “three-parent babies,” religious groups concerned with viola:ons of life and family sanc:ty, and Members of Parliament (MPs) who were concerned with safety and ethical issues. Despite this resistance to the HFEA regula:ons’ passage, they were passed by a vote of 382 in favor and 128 against (Parliament, 2015). How were the regula:ons passed, and what does this signify for those with mitochondrial disease in the UK? To answer these ques:ons, I will perform a discourse analysis of the February 03, 2015 debate in Parliament that occurred prior to vo:ng in the 2015 HFEA regula:ons (hereaQer referred to as “the regula:ons”). I will analyze the terminology, the arguments of the debate, and how mitochondrial disease and MRT were discussed in order to construct how MRT and mitochondrial disease were framed in the discourse, and how this could have contributed to the regula:ons’ passage. I will then analyze this framing of MRT and mitochondrial disease against social science and medical literature to ascertain if there were relevant facts or addi:onal concerns not addressed in the discourse, and what these gaps may signify for pa:ents. I will conclude with arguing that while the discourse frames MRT as needed health technologies for families with mitochondrial disease, pa:ent access to these technologies is very restricted, and this issue was 2
  • 3. seemingly overlooked by policymakers and MPs in the discourse. Future policy must either improve pa:ent access to MRT out of an obliga:on to make disease preven:on technology available to those in need, or policymakers, fer:lity clinics, and physicians must reflect greater transparency about the limits to accessing these procedures in the implementa:on stage so that pa:ents are fully informed and not given false hope. Mitochondrial Disease and Mitochondrial Replacement Techniques Mitochondria are contained within cells and give the cell their energy. Mitochondrial disease arises when the mitochondria are not producing enough energy for a cell, which can cause cells to work inefficiently or not at all. This inability of cells to work efficiently can cause func:oning problems in different parts of the body, depending on how many mitochondria are affected. Lily describes mitochondrial disease as “not a single disease but more like a collec:on of condi:ons” that “may literally cause any symptom, in any organ, with any degree of severity, at any age” (2013b). The term “mitochondrial disease” is an umbrella term for the wide variety of symptoms and condi:ons with different levels of severity. “Severe” or “serious” mitochondrial disease refers to those condi:ons that can be highly debilita:ng, very painful, or fatal. Mitochondrial disease is a gene:c muta:on that can be inherited from the mother, father, both parents, or manifest in a person for the first :me, and it is es:mated that 1 in 200 babies in the UK are born with risk for mitochondrial disease (Lily, 2013b). Mitochondrial disease usually arises from a gene:c muta:on in mitochondrial DNA, but can also arise from a muta:on in nuclear DNA (Lily, 2013a). Nuclear DNA is 99.9% of a human’s total DNA, comes from both parents, and determines all inheritable traits and characteris:cs. Mitochondrial DNA is 0.1% of a human’s total DNA, comes only from the mother, and determines only mitochondrial func:on. Mitochondrial replacement techniques are procedures in which the nuclear DNA is moved from the mother’s egg or embryo cell (containing unhealthy mitochondria) to a donor’s egg or embryo cell (containing healthy mitochondria) that has had the nuclear DNA removed. This procedure allows the resul:ng child to avoid inheri:ng unhealthy mitochondria and a high risk for 3
  • 4. mitochondrial disease. The two procedures approved in the HFEA regula:ons are pronuclear transfer (PNT) and maternal spindle transfer (MST). PNT involves a nuclear transfer between eggs aQer each is fer:lized by the father’s sperm, while MST involves a nuclear transfer between unfer:lized eggs where only the healthy egg is fer:lized by the father’s sperm (Barber, 2015, pp. 7-8). The resul:ng egg or embryo will have the nuclear DNA of both parents, and the donor will contribute 0.1% of their own DNA through their donated mitochondria. Discourse Analysis of the UK Mitochondrial Replacement Techniques Debate My discourse analysis will focus on the House of Commons debate that occurred prior to the vote that approved the regula:ons. I will focus on this single discussion for two reasons: (1) analyzing the full five to six years of policy development is beyond the scope of this paper, and (2) this final debate was limited to ninety minutes and had the power to pass or delay the regula:ons. This was not only a highly significant moment for this policy’s development, but the debate would also have limited the discussion to only the points, ques:ons, or concerns that remained the most important throughout the en:re period of policy development. I will look at the terminology, how the arguments were constructed, and how MRT and mitochondrial disease were discussed to construct how MRT was framed and how this may have lead to the regula:ons’ passage. Even though I limit my analysis to this single debate, I will have to further limit the extent of my analysis, as it would be impossible to go highly in-depth within the scope of this paper. To summarize the debate, those in favor of approving the regula:ons argued for the importance of MRT for others and that years of thorough research and review sufficiently demonstrated the safety and public acceptance of MRT. Those opposed to the regula:ons, or hesitant of approving the regula:ons too has:ly, cited concerns that there was not enough research to demonstrate the safety of the procedure, worries that MRT would cause a slippery slope to human gene:c modifica:on or “designer babies,” and concerns that children would be harmed by a “three-parent” iden:ty (Barber, 2015, pp. 19-23). Supporters of the regula:ons 4
  • 5. responded by reitera:ng that the research to all ethical and safety issues was thorough and that the research indicated that the risks were very low. I will begin my discourse analysis by addressing terminology. The first term I would like to analyze is the term “mitochondrial disease.” Use of the term “mitochondrial disease” is frequent in the discourse, with occasional use of the adjec:ve “serious” or “severe.” As described by Lily (2013b), “mitochondrial disease” is an umbrella term for a variety of condi:ons and symptoms, and use of the adjec:ve “severe” or “serious” is used to designate those condi:ons or symptoms which are debilita:ng or fatal. These two terms, which are supposed to refer to different concepts, were used in the discourse interchangeably. To provide examples, MP Jane Ellison, who spoke first in the debate, stated, “Unhealthy mitochondria can cause severe medical disorders, known as mitochondrial disease” (Hansard, 2015). MP Paul Burstow also conflated the two concepts when he stated, “Mitochondrial disease shortens lives, causes serious disability and it leaves heartache in its wake” (Hansard, 2015). These descrip:ons of mitochondrial disease portray all mitochondrial disease as inherently severe, which obscures the reality, but also has an effect of appealing to people’s sympathy and poten:ally winning support. This understanding of mitochondrial disease may have influenced the second pakern in the discourse, where mitochondrial disease was framed as a serious health issue in need of treatment or preven:on. MP Luciana Berger stated: We have within our reach the possibility of eradica:ng mitochondrial disease from families who have been blighted by it for genera:ons: families who have endured a disease for which there is no cure, who have suffered daily bakles with painfully debilita:ng symptoms (Hansard, 2015). This portrayal of mitochondrial disease as a condi:on in desperate need of preven:on was agreed upon consistently in the discourse, even amongst MPs who did not support the HFEA regula:ons. MP Fiona Bruce, who argued against passing the regula:ons, likewise agreed, “Human mitochondrial disease is a dreadful condi:on and, as a caring society, we must do all that we can to 5
  • 6. address it” (Hansard, 2015). This unanimous agreement on the seriousness of mitochondrial disease and the need for preven:on caused the debate to be structured on arguments about the :ming and implementa:on of MRT, not about the legi:macy and importance of MRT themselves. For those in support of the regula:ons, the framing of mitochondrial disease as a serious illness helped create a tone of urgency. MP Luciana Berger stated, “Time is precious for those parents at risk of passing on mitochondrial inherited disease to their children, and I believe we must not delay any further” (Hansard, 2015). The overall tone of urgency can have an effect of placing pressure on voters who may be hesitant or undecided to vote in favor of MRT. For the opponents of the regula:ons, the framing of mitochondrial disease as a serious illness caused their arguments to focus on how the ethical and safety concerns outweighed the benefits of MRT. MP Richard Drax stated, “Everyone in this house wants the best for these families—there’s no doubt about that— its just the speed that I’m mostly concerned with” (Hansard, 2015). MP Steve Baker stated, “The knowledge about these techniques is uncertain and could remain so for several genera:ons. Their use could poten:ally harm future persons. . . That is why I will not support the measure today” (Hansard, 2015). Such statements, which appealed to erring on the side of cau:on despite the benefits of MRT, could also create pressure to sway votes. The response to these concerns about the ethical and safety concerns of “moving too quickly” were to reiterate the years of scien:fic and ethical research that had been conducted by the HFEA and other actors. MP Paul Burstow stated reassuringly, “Safety and efficacy on every occasion will be considered as a consequence of these regula:ons” (Hansard, 2015). MP Andrew Miller stated: The risks are small but worth taking because the benefits on the other side of the equa:on are enormous. . . benefits for the about 2,500 families affected by mitochondrial disease up and down this na:on, and they deserve our support (Hansard, 2015). 6
  • 7. Such statements, which provided reassurance that the safety and ethical standards were high and low-risk, may have had the effect of re-establishing the pressure to act in favor of MRT to benefit the families in need. This discourse frames MRT as needed health technologies for the preven:on of mitochondrial disease, where the disease itself was portrayed as inherently debilita:ng, and this framing was accepted by both sides of the debate. This framing may have contributed to the regula:ons’ passage by placing greater burden of proof upon the opposi:on and pumng pressure on MPs to vote on the side of health. This framing of MRT may have been effec:ve in the passing the regula:ons, but how does this framing compare to the real world? In the next sec:on, I will compare the Parliamentary framing of MRT and mitochondrial disease against medical and sociological literature. This literature paints a cri:cal picture of the dominant discourse by illustra:ng misconcep:ons and revealing significant implementa:on issues that have not been addressed by the discourse. Specifically, the barriers to accessing MRT that pa:ents in need may face. I have sorted these findings into three categories which I will call (1) awareness barriers, (2) access barriers, and (3) financial barriers. Barriers to MRT The first category is awareness barriers, which are difficul:es in making people aware of one’s mitochondrial disease and how it can be prevented. According to Dr. Mary Kay Koenig (2008, p. 307), mitochondrial disease is very difficult to diagnose. Difficulty in diagnosis can cause many sufferers of mitochondrial disease to be unaware of their condi:on, which will exclude them from seeking MRT for mitochondrial disease preven:on for their children. To help at-risk pregnancies benefit from MRT, beker diagnos:c prac:ces are essen:al. In addi:on, awareness of MRT as preven:on methods may be tainted by the media’s controversial depic:on of MRT as “three- parent baby” procedures (Stanley, 2015; Devlin, 2015; Boyle, 2015). Such depic:ons may be off- 7
  • 8. pumng to those that could benefit from MRT when having children. In the discourse, the problem of accurately diagnosing mitochondrial disease was not acknowledged. The effect that the controversial portrayal of “three-parent babies” would have on the public was also not considered, and may have been overshadowed by asser:ons that public consulta:ons demonstrated that the majority of UK residents wanted the procedure (Hansard, 2015). The assurance that the public has already spoken in favor of MRT may have overlooked real problems of how media portrayal can affect the public’s opinion or create s:gma. The second category is access barriers, which are physical difficul:es in obtaining MRT. According to the HFEA (2015c) fer:lity clinics will have to be licensed before they can provide MRT, and will have to apply for a license through the HFEA to prove that they have appropriate equipment and trained staff to carry out the procedure (HFEA, 2015c). The HFEA (2015a) speculates that very few clinics will be able to offer MRT ini:ally. The scarcity of clinics able to provide MRT may create difficul:es for pa:ents that live far from approved clinics or find it difficult to travel. The discourse did acknowledge the stringent applica:on process for clinic applica:ons and that access may be limited at first, but the narrow implementa:on in clinics was portrayed posi:vely as an assurance of rigid safety measures without acknowledging the downside of delaying pa:ent access (Hansard, 2015). A second issue is the availability of donor eggs. The amount of available donor eggs is limited, and is further constrained by HFEA regula:ons (2015c) that donor eggs must come from an MRT-licensed fer:lity clinic and have the donor’s consent to be used for MRT. In addi:on, scien:sts Masahito Tachibana, et al. (2013) discovered problems in successfully using MRT in human eggs. Sociologist Cathy Herbrand (2016) explains that MRT have a 25% success rate, so a successful pregnancy may require about four rounds of treatment for each pa:ent. The general lack of donor eggs together with the steps required for the procedure may make it difficult for many pa:ents to undergo MRT successfully in a clinic. The problem of too-few donor eggs was not discussed or acknowledged in the discourse. 8
  • 9. A final issue is that the regula:ons will only permit use of MRT for a pa:ent aQer demonstra:on that there is a “serious risk” of passing on a “serious” mitochondrial disorder to offspring (HFEA, 2015b, p. 2; HFEA, 2015c). Not all people with mitochondrial disease have severe manifesta:ons of the disease, so not all pa:ents that wish to use MRT may qualify. The regula:ons also do not concretely define what cons:tutes a “serious” mitochondrial disease. This restric:on, and how it could exclude some pa:ents with mitochondrial disease, was not highlighted in the discourse, but this may be because the discourse conflated mitochondrial disease with “serious” mitochondrial disease. The final category is financial barriers, which are costs that could make obtaining MRT impossible or burdensome to those who can’t afford it. Herbrand (2016) explains that the es:mated cost for the recommended four rounds of treatment is £80,000, and that it is s:ll uncertain who will be expected to pay for MRT and whether the cost will fall upon pa:ents or the NHS. If these costs are expected to be paid out-of-pocket, not every pa:ent will be able to afford MRT. None of these issues of cost were discussed or addressed in the discourse. Conclusion The discourse framed MRT as needed health technologies for the preven:on of serious disease, yet the discourse did not address the many poten:al complica:ons surrounding pa:ent access to MRT—complica:ons that caused Herbrand (2016) to conclude that MRT are not a miracle solu:on for families, and that the facts need to be put into perspec:ve for pa:ents. How can the message of the discourse be reconciled with the reality? First, it may have been a maker of ignorance or limited scope, as the primary goal of legalizing MRT may have caused MPs and policymakers to only address and correct barriers that would have delayed passing the regula:ons in Parliament. Second, ignoring the ques:on of pa:ent access may have been strategic, as discussing limits at this early stage may have lost votes of support and further delayed the regula:ons’ passage. Third, ques:ons of pa:ent access may have been viewed as a secondary 9
  • 10. issue that would be irrelevant to address un:l passage of the regula:ons had been secured. Whatever the poli:cal reasons, in the best interest of pa:ents, who have a right to honesty about their healthcare op:ons and a right to access health technologies that can prevent disease in themselves and their children, policymakers, MPs, and clinic physicians must be honest about the use of MRT for mitochondrial disease in the implementa:on stage. If MRT are seen as essen:al health technologies, the policymakers should address the barriers to access to make needed technologies available to pa:ents. If MRT are seen as nonessen:al technologies that are more of a luxury than a right, policymakers, physicians, and clinics must be honest about the physical, medical, and financial limita:ons to qualifying for and using MRT in a clinic, and not publicize hopes that all with mitochondria disease will be able to access these treatments, as was seemingly done in the discourse. 10
  • 11. REFERENCES Barber, S. and Border, P. 2015. Mitochondrial Dona2on. London: House of Commons Library. Boyle, D. 2015. UK Becomes First Country in the World to Legalise Three-Parent Babies AQer Lords Approves Controversial IVF Technique. Daily Mail. [Online]. [Accessed April 15, 2016]. Available at: hkp://www.dailymail.co.uk/news/ar:cle-2967544/UK-country-world- legalise-three-parent-babies-Lords-approves-controversial-IVF-technique.html. Devlin, H. 2015. Britain’s House of Lords Approves Concep:on of Three-Person Babies. The Guardian. [Online]. [Accessed April 15, 2016]. Available at: hkp:// www.theguardian.com/poli:cs/2015/feb/24/uk-house-of-lords-approves-concep:on-of- three-person-babies. Hansard HC Deb. vol.592 cols. 160-192. February 03, 2015. Herbrand, C. 2016. Mitochondrial Replacement Techniques and Reproduc:ve Choices: An Emp
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