D. Jansen De derde dinsdag van september was het weer zo ver: Prinsjesdag. In Den Haag sprak koning Willem-Alexander de troonrede uit en werd het koffertje...
By Jens Thomaes
Proof is overwhelming, undeniable and most obvious nowadays. (Medical) technology improves our health and benefits the quality of cures and treatments for humans. Anno 2016 it has become very clear how medicine, technical devices and sophisticated inventions ensure and sustain human health by preventing or curing all kinds of disabilities and health problems. The suffering of people from medical issues decreases due new medical – technical developments. Not just inventions like X-rays or anesthetics improve this quality, but also for medical care unconventional sciences increasingly functions to benefit our health care. An example is the use of health IT to promote quality improvement in primary care and its potential for also non-primary care.(1)
A more controversial example is the use of preimplantation genetic diagnosis (from now: PGD) to prevent monogenetic diseases and the promising ability it carries to fight polygenetic diseases too.(2) PGD is in the meantime routinely practiced around the globe for mainly medical purposes. It is however observed that also frequently non-therapeutic treatments are executed, for instance in the USA. It could be argued that genetic interference – disconnected from the critics of creating designer babies – can have positive impacts on that individual’s later life. One way to do so is preventing genetic diseases. Another, more novel and controversial way to do this is changing or preventing undesired severe cosmetic deviations of that individual. The major objective of PGD is obviously to secure a healthy genetic make-up for unborn, but now the applications extended to other treatments involving genetic traits, which creates a tension with the conventional notion of practicing medicine.
Advancements in technologies like PGD enable us to create healthier humans. It ensures a decrease in suffering, emotional burden and other undesired negative implications of those who in the first place were destined with a (severe) genetic disorder. Treating these horrible deviations is what most states (and people) see as a right and just application of the technique. Even in the USA 46% of the people thinks that changing a baby’s genes to prevent serious diseases is appropriate.(3) From the 31 states that produced legislation regarding PGD, only 5 have completely banned the practice.(4) It’s a legitimate way to improve life quality and secure a healthy existence for baby’s who are without PGD treatment will suffer from the opposite fate. In that sense it’s legally compatible with the right to health, as codified in universal treaties like the International Covenant on Economic, Social and Cultural rights as well as multiple others, as we shall see. It’s therefore internationally known as a basic legal principle.(5) It should be considered that progress in technologies that improve human health in novel (unconventional) ways, carry implications for the right to health as such. New technologies like PGD cause tensions in the practice of medicine, moral concepts and legal notions. In view of the above this tension deserves a focus and as a result we derived the following research question:
Can developments in PGD alter or broaden our legal understanding for the right to health?
To answer this question we will derive conclusions on the individual elements of the research question, bringing us to three sub questions; ‘What are the current possibilities and developments of PGD?’; discussed in chapter 2. In chapter 3 we focus on the definition, the ambiguity and our own understanding of health for this essay. Subsequently, we try to find out in chapter 4 how PGD developments alter, influence or broaden our legal understanding of the right to health.
2. What are the current possibilities, practices and developments of PGD?
PGD provides in a method that prevents the birth of babies that suffer from genetic disorders. In combination with IVF an embryo with the correct – desired genetic profile is selected from multiple embryos and inserted in the females’ uterus, where it continues to grow, free of the screened diseases. Since 1989 over a thousand healthy babies have been born around the globe, using the PGD method. It was the UK who first used it to prevent X-linked genetic diseases, by selecting a Y-embryo instead.(6) An interesting element here was that the burden of the inability to bare a healthy child, moved from a social problem to a medical problem.(7) As the technology kept developing and improving new applications have been observed and practiced in the years after. It didn’t take too long before PGD was used to facilitate in other (parental) desires too. The emergence of sex-selection for social purposes (like family balancing) or simply the individual preference for a boy or a girl became a practical option. Such developments can cause problems in countries like China and India where boys are preferred above girls since they enjoy social and cultural privileges.(8)
Despite the fact that gender and other genetic preferences are often result of social, cultural and economic causes or motivations, sex selection falls outside the scope of this paper.(9) However, these social, cultural and economic forces or motivations do have relevance for other applications in PGD treatments that we discuss. The cosmetic, savior and disability babies became a reality through PGD and are in fact fueled by the same basic forces as the desire for a specific gender. They find their basis in socio-economic and cultural foundations, but also in individual choices. First example is the savior babies; those who are born to save their sibling. A good example of justifying technology to save another person who suffers from a lethal disorder, at the ethical or moral expense of the savior baby. The savior baby illustrates the acceptability of extending technological uses when we can safe lifes; acceptable, many agree. Large ethical ‘payments’ are made for such applications, could be stated.
Reports of disability babies however are more controversial and fortunately relatively rare; those who are born with a disability intended by the parents who suffer from the same disability. The main implication so far is the stretching element of what we apparently view as morally acceptable. Main reason for allowing the disability baby was the idea that blind, deaf or very small people do not always see these inconveniences as a disability, but rather as their ‘way of life’ or cultural identity.(10) Here we observe a function that goes beyond the one of the savior baby. Not a matter of life and death, but the preference of the parent(s) dominates here. Whereas the disability baby is probably the most intriguing outcome of PGD, the cosmetic baby is in this paper the most relevant one. We will use it as a guiding example to illustrate developments and tensions in PGD related to the notion of health and the right to health.
The UK has the most advanced and liberal legislation regarding PGD so far worldwide.(11) It was in 2007 that the English Human Fertilization and Embryology Authority (from now HFEA) granted a license to screen embryos on genes that cause severe squint.(12) As a result a baby was born who was free of the undesired cosmetic condition thanks to the screenings. Here we meet the cosmetic baby. Indeed, squint is not directly medically dangerous in the sense of threatening to shorten life or causing severe physical dangers to the body. This threat has become a crucial point in the debate of genetic screenings. Dr. David King argues that the condition does not impose a direct threat to the life of this person and that means genetic screenings of this type goes one step too far.(13) On the other hand, it is (very) likely that this person has to overcome social barriers and significant challenges that free the way to psychological stress, social exclusion and self-esteem complexes.
A situation like this raises questions about what we should understand under health and to what extent PGD should be allowed to prevent future health problems, which are in this case not directly physically related but occur on a mental and psychological health level. Scholars are divided when it comes to the ethical acceptability of treatments like this. In England, however, it is the HFEA that decides on individual requests whether or not to grant licenses that allow genetic screenings. Contrary to the regulatory excellence of the UK in this field, the US has not regulated the practice at all in federal legislation. For that reason many couples have decided to start PGD treatments to have a child with particular desired traits, leading to treatments from sex-selection (for medical and non-medical reasons) to bringing cosmetic and disability babies in this world.(14) These practices show the juvenile legal character of the relative new technique and show a need for regulation.
3. How do we understand health?
Everyone seems to understand the meaning of health in the first place, but when lines have to be drawn and choices to be made it appear a complex notion. Health contains many dimensions and covers a wide variety of characteristics. The World Health Organization defines health as: ‘a state of complete physical, mental and social well- being; and not solely the absence of disease or infirmity’.(15) Johnson has made classifications and sub-classifications in an attempt to understand health in more detail. He positions the WHO definition as an ‘assumptive definition’ and has subdivided this main category in an ‘aspirational or idealistic’ subcategory. Other categories he made are ‘dictionary’, ‘determinist’ and ‘spiritual’ definitions of health. He describes the wide variety of different health perceptions and by doing so he underlines the lack of a universal understanding of health.(16) Others argue even that the plural character of health makes the WHO definition unhelpful and even counterproductive. They think this definition contributes to medicalization of societies, as an increasing amount of elements or features are identified as causes that lead to health or disease.(17) The ambiguity of health is significant and thus quite challenging to make consistent authoritarian choices involving biological and genetic interventions like PGD. No consensus or clear reference points seem to exist upon which correct choices can be made on an international level. Inconsistency and different (legal) approaches dominate nations views on this topic.
For this reason it’s relevant that we determine what health means; preferably on national levels to overcome the plural character in that regard and determine it for specific purposes. From a broad health perspective one might start to argue that even the gene that causes birthmarks is for him good reason to start PGD treatment, as it is cosmetically undesired and therefore mentally or psychologically stressful. This is an example that seems to go beyond proper use of the technique. We need more specifics. Although, when this person’s cosmetic appearance is so deviant that birthmarks dominate his entire body and face the case could be entirely different. These lines are sometimes very thin and choices particularly hard to make, for instance because uncertainty whether the feared effects will appear, function as a counterweight. In the case of severe squint this could indeed bring severe psychological stress to an extent that we undoubtedly speak of (mental) health problems. Another important element that influences health is – besides physical and mental health – based in social relations and interactions.
The absolute necessity of social interactions, relations and positive connections with other human beings is essential to feel and function as a healthy person. For important parts this is linked to mental well-being and even physical well-being too.(18) Despite the aspirational and perhaps even counterproductive health definition of the WHO, they seem – unsurprisingly – to be right that a state of health involves at least the elements of physical, mental and social well-being. Our definition for this paper is to emphasize the importance of mental and social well-being in order to enjoy health. We assume in this context that other elements of health as stated by the High Commissioner like access to water, housing, health-related education, gender equality etc. to limit the scope is not taken in consideration for now.(19) Instead, we emphasize here on mental and social well-being because in the end we live according western modern welfare standards. Access to water etc. is for that reason not less important in western societies, but less problematic. Again, despite the aspirational character of these two elements they can’t and shouldn’t be ignored. In this paper we mean here with health to be ‘healthy’ in a mental and social way, and we assume physical health. By doing so an emphasis on these health dimensions is favored. It brings us to a closer examination of these two important, but mainly secondary prioritized elements that construct health.
4. How does the PGD technique alter our understanding of the right to health?
The law guarantees the right to health in many forms and treaties and is internationally acknowledged as a human right.(20) Most prominent is perhaps article 12 of the International Covenant on Economic, Social and Cultural rights.(21) In article 12 (2) sub (a) and (c) we can find two strong legal grounds for the support of PGD from an international law perspective. These laws state that measures should be taken to achieve the healthy development of a child. In addition, measures for the prevention of diseases including mental ones are required. Our intervening abilities related to health (improvement) grow, just like the identification of factors that are now understood as remedies or causes that influence health (risks). This means in the first place that health is becoming broader in a theoretical way as we gain more knowledge about the factors that influence health.
Second, health is a condition on which we have increasing technical influence from a treatment or prevention perspective. Therefore, it can easily legitimate new treatment methods to disable factors in the body that lead to a particular disease or discomfort. In that sense, the medicalization of societies is a fact.(22) We even seem to accept non-medical treatments that cause no direct danger for human life. By allowing treatments for cosmetic purposes, we apparently enlarge our understanding of health, because we find the burden intense enough to allow the PGD treatment. Important is also that state authorities (HFEA) approve the treatment, as they represent the official states’ view. The English HFEA claims only to allow these procedures when they find them necessary. The request comes from the clinic; when a new procedure is requested that hasn’t been executed before, the clinic must wait approval from the HFEA.(23) In this case they have figured that this person otherwise will be limited in a healthy life, since non-medical treatment is not allowed in the first place.
In case of the ‘cosmetic baby’ that might suffer from severe cosmetic abnormalities we observe a clear example of the enlargement of the health notion. As we know today, such abnormalities can indeed cause mental health problems.(24) The prevention or cure for a condition like this gets easier and more successful as technical developments continue. Despite the fact that variety and deviations to a certain extent is what makes us unique individuals, we should nonetheless acknowledge the right and interest of the child. That means he should have ‘a right to fit in’. It would be unfair and unequal to not consider those interests and rights, purely because it contains cosmetic aspects. An immediate rejection for PGD treatments in such cases is therefore in my view unjust. Rather, conducting examinations on a case-by-case basis for (extreme) cosmetic abnormalities would be more fertile and should not damage moral or ethical conceptions as such.
The High Commissioner continues in his explanation of the right to health that entitlements are a crucial part of the obligations of states. One of these entitlements include (inter alia); the right to a system of health protection providing equality of opportunity for everyone to enjoy the highest attainable level of health.(25) That health protection system in the form of PGD treatments reached before the cosmetic baby in practice not further than the prevention of harmful genetic diseases, in the classical meaning. Indeed, PGD treatment to prevent disorders that certainly imply mental health issues is to a much lesser extent subject to controversy compared to treatment to exclude a genetic trait that has an indirect and potential link to cause mental and psychological problems.
The relation between an undesired cosmetic trait and its potential to develop mental health problems seems in that regard more problematic from a moral or ethical perspective, it appears. Proof of this statement could be derived from the list of genetic diseases issued by the HFEA, which states what diseases are allowed for screening.(26) It deserves attention that potential mental problems are easily caused due severe deviating cosmetic appearance as they ensure a social and personal challenge for the particular person. Bullying and other forms of social exclusion in childhood can and often does have significant negative implications in adulthood.(27) Self-esteem, security, low stress levels, social relations; friends, love, self-image and so on are crucial factors that have a major influence on ones life, happiness and health.
Even when the chance is not substantial, but ultimately present because the father has these external severe deviating features than PGD treatment for a cosmetic baby should be considered when requested. The authority deciding on such requests lays in the UK with the HFEA as said and its decisions will always be subject of debate, but a pertinent exclusion of cosmetic genetic screening should not be carried out. Disallowing PGD treatment could however be justified – in case the deviation manifests – when the undesired cosmetic trait is easily corrected with for instance plastic surgery or disappears as the person grows older. In this case that appeared to be extremely difficult, expensive and harmful, based on the father’s experience.
In General Comment 14 on the right to health is in paragraph 9 acknowledged that the relation between states and individuals can not cover every aspect of human health as an important part lays in factors outside the power of the state. It states as follows:
“Thus, genetic factors, individual susceptibility to ill health and the adoption of unhealthy or risky lifestyles may play an important role with respect to an individual’s health.” (28)
Whereas genetic screening and PGD were out of the influential medical scope just some decades ago, we observe today the advancements being made in this field and the human intervening force regarding them. Genes are now in a limited way suitable for artificial alteration, safe selection and health improvement. It’s for that reason that could be argued that the right to health now seems to extend to genetic levels. Indeed, PGD for cosmetic traits can be seen in the scope of being a measure or ‘entitlement’ for states – as the High Commissioner calls it – to provide in larger extent ‘equality of opportunity’ as well as strengthening the capacity to ‘enjoy the highest attainable level of health’.(29)
We have seen that PGD isn’t limited anymore to solely genetic disease prevention. It is today also used for other purposes than medical ones. Despite the fact that many states regulated the practice, in some states like the US it’s still federally unregulated. The interest of the child is for that reason not always a dominant interest anymore; also siblings’ and parental interests seem to be acknowledged, as the savior- and disability baby prove. We observe here expansions in the way PGD technology is used. In that sense it sets a precedent for other genetic related technologies. Another element in the technology is the influence it can have over health problems that do not directly relate to physical or mental health, but instead to genes that cause a severe deviating appearance, but have no direct medical danger. However, subsequently these genes are likely to result in mental or psychological stress disorders, since the gene causes disturbing effects on peoples’ mental and social well-being, causing other related health problems. The UK is a leading and progressive state in this field, with a liberal and advanced framework that fosters and seems to realize the importance of elements like mental and social well-being, as mentioned by the – through some criticized – WHO definition of health. Despite the majority of states the UK explores this level of PGD implications in order to find out how the quality of lives can be improved. Case-by-case examinations and reflections should be able to prevent excessive problematic effects in medical or social contexts and that being said it can be concluded that progressive policy should be carefully explored when technology allows improving human well-being. Even when it seems to be controversial in the first place.
(1) Higgins TC, Crosson J, Peikes D, McNellis R, Genevro J, Meyers D. (2015) Using Health Information Technology to Support Quality Improvement in Primary Care. AHRQ Publication No. 15-0031- EF. Rockville, MD: Agency for Healthcare Research and Quality.
(2) Cooper, A. R., & Jungheim, E. S. (2010). Preimplantation Genetic Testing: Indications and Controversies. Clinics in Laboratory Medicine, 30(3), 519–531. Retrieved 23 May 2016, from http://doi.org/10.1016/j.cll.2010.04.008.
(3) Engineering the Perfect Baby (2015). MIT Technology Review. Retrieved 26 May 2016, from https://www.technologyreview.com/s/535661/engineering-the-perfect-baby/.
(4) 218 McCarthy, supra note 207, at 305; PRENDA, supra note 177, § 2(a)(1)(E); Kalfoglou et al., supra note 212, at 2731.
(5) International Covenant on Economic, Social and Cultural Rights Adopted and opened for signature, ratification and accession by General Assembly resolution 2200A (XXI) of 16 December 1966. entry into force 3 January 1976, in accordance with article 27.
(6) Www.genetics-and society.org. Retrieved 27 May 2016, from http://www.genetics-and society.org/technologies/other/pgd.html.
(7) Directorate General for Internal Policies Policy Department A: Economic and Scientific Policy Science and Technology Options Assessment Human Enhancement, Brussels, European Parliament, May 2009, p. 76.
(8) Deidre C. Webb, The Sex Selection Debate: A Comparative Study of Sex Selection in the United States and the United Kingdom, South Carolina Journal of International Law & Business, Vol. 10.1, [163 – 200], p. 165.
(9) World Health Organization (2011), Preventing Gender-Biased Sex Selection: An Interagency Statement: OHCHR, UNFPA, UNICEF, UN Women and WHO 4, 10 p. 10.
(10) Directorate General for Internal Policies Policy Department A: Economic and Scientific Policy Science and Technology Options Assessment Human Enhancement, Brussels, European Parliament, May 2009, p. 74.
(11) Brownsword, R. “Biotechnology and Rights: Where are we Coming From and Where are we Going.” In Human Rights in the Digital Age, by M. and Murray, A. Klang, 230. Great Britain: Glasshouse Press, 2005.
(12) BBC NEWS | Health | Embryos to be screened for squint. (2007). News.bbc.co.uk. Retrieved 30 May 2016, from http://news.bbc.co.uk/2/hi/health/6634015.stm.
(13) Dr. D. King is a molecular biologist, and director of Human Genetics Alert.
(14) Deidre C. Webb, The Sex Selection Debate (2010): A Comparative Study of Sex Selection in the United States and the United Kingdom, South Carolina Journal of International Law & Business, Vol. 10.1, [163 – 200], p. 185.
(15) Warwick-Booth, L., Cross, R., & Lowcock, D. (2016). Contemporary Health Studies: An Introduction (1st ed.).
(16) Idem, p. 12.
(17) Godlee, F. (2011). What is health?. BMJ, 343 (jul27 2), d4817-d4817. Retrieved on 26 May 2016, from http://dx.doi.org/10.1136/bmj.d4817.
(18) Bolívar, J., Daponte, A., Rodríguez, M., & Sánchez, J. J. (2010). The Influence of Individual, Social and Physical Environment Factors on Physical Activity in the Adult Population in Andalusia, Spain. International Journal of Environmental Research and Public Health, 7(1), 60–77. http://doi.org/10.3390/ijerph7010060.
(19) The right to health. (2008) (1st ed., p. 3). Geneva. Retrieved from http://www.ohchr.org/Documents/Publications/Factsheet31.pdf
International human rights treaties recognizing the right to health:
• The 1965 International Convention on the Elimination of All Forms of Racial Discrimination: art. 5 (e) (iv) • The 1966 International Covenant on Economic, Social and Cultural Rights: art. 12 • The 1979 Convention on the Elimination of All Forms of Discrimination against Women: arts. 11 (1) (f), 12 and 14 (2) (b) • The 1989 Convention on the Rights of the Child: art. 24 • The 1990 International Convention on the Protection of the Rights of All Migrant Workers and Members of Their Families: arts. 28, 43 (e) and 45 (c) • The 2006 Convention on the Rights of Persons with Disabilities: art. 25.
(21) The Covenant was adopted by the United Nations General Assembly in its resolution 2200A (XXI) of 16 December 1966. It entered into force in 1976 and by 1 December 2007 had been ratified by 157 States.
(22) Godlee, F. (2011). What is health?. BMJ, 343(jul27 2), d4817-d4817. http://dx.doi.org/10.1136/bmj.d4817.
(23) PGD conditions licensed by the HFEA – testing and screening. Guide.hfea.gov.uk. Retrieved 30 May 2016, from http://guide.hfea.gov.uk/pgd/.
(24) Tine Louise Mundbjerg Eriksen, Helena Skyt Nielsen, Marianne Simonsen (2012, p. 16 – 17), The Effects of Bullying in Elementary School, IZA DP No. 6718.
(25) The right to health. (2008) (1st ed., p. 3). Geneva. Retrieved from http://www.ohchr.org/Documents/Publications/Factsheet31.pdf.
(26) PGD conditions licensed by the HFEA – testing and screening. Guide.hfea.gov.uk. Retrieved 30 May 2016, from http://guide.hfea.gov.uk/pgd/.
(27) Tine Louise Mundbjerg Eriksen, Helena Skyt Nielsen, Marianne Simonsen (2012, p. 16 – 17), The Effects of Bullying in Elementary School, IZA DP No. 6718.
(28) UN Committee on Economic, Social and Cultural Rights (CESCR), General Comment No. 14: The Right to the Highest Attainable Standard of Health (Art. 12 of the Covenant), 11 August 2000, E/C.12/2000/4, available at: http://www.refworld.org/docid/4538838d0.html [retrieved on 30 May 2016]
(29) The right to health. (2008) (1st ed., p. 3). Geneva. Retrieved from http://www.ohchr.org/Documents/Publications/Factsheet31.pdf.
L. van Hoorn Nee, het voornemen om arbeidsgehandicapten onder het minimumloon te betalen is toch van de baan. Donderdag 6 september is bekend geworden dat...