1 Department of Obstetrics and Gynaecology, Groote Schuur Hospital and Faculty of Health Sciences, University of Cape Town, Cape Town, South Africa 1 南非开普敦大学 Groote Schuur 医院和健康科学学院妇产科
2 ARC Fertility, Cupertino, CA, USA 2 ARC Fertility,美国加利福尼亚州库比蒂诺
3 Yale University, New Haven, CT, USA 3 耶鲁大学,美国康涅狄格州纽黑文市
4 Universidad Diego Portales, Santiago, Chile 4 Universidad Diego Portales, 圣地亚哥, 智利
Achieving more equitable access to assisted reproduction 实现更公平的辅助生殖机会
Equitable access to fertility care must be recognised as a human right so that it can be better balanced with other societal needs, say Silke Dyer, David Adamson, Marcia Inhorn, and Fernando Zegers-Hochschild Silke Dyer、David Adamson、Marcia Inhorn 和 Fernando Zegers-Hochschild 说,公平获得生育保健必须被视为一项人权,这样才能更好地平衡它与其他社会需求
Silke J Dyer, ^(1){ }^{1} G David Adamson, ^(2){ }^{2} Marcia C Inhorn, ^(3){ }^{3} Fernando Zegers-Hochschild ^(4){ }^{4} Silke J Dyer, ^(1){ }^{1} G David Adamson, ^(2){ }^{2} Marcia C Inhorn, ^(3){ }^{3} Fernando Zegers-Hochschild ^(4){ }^{4}
Infertility affects one in six people in their lifetime yet remains a neglected global health problem. ^(1){ }^{1} The World Health Organization (WHO) recognises infertility as a disease and has highlighted the need for prevention and management to be more central in health research and policy, including wider and more equitable access to assisted reproductive technology (box 1). 不孕症影响着六分之一的人在其一生中,但仍然是一个被忽视的全球健康问题。 ^(1){ }^{1} 世界卫生组织 (WHO) 承认不孕症是一种疾病,并强调需要将预防和管理放在卫生研究和政策的更核心位置,包括更广泛和更公平地获得辅助生殖技术(框 1)。
Box 1: Infertility and assisted reproduction 方框 1:不孕症和辅助生殖
The World Health Organization defines infertility as a disease of the male or female reproductive system, characterised by the failure to achieve a pregnancy after >= 12\geq 12 months of regular unprotected sexual intercourse 世界卫生组织将不孕症定义为男性或女性生殖系统的疾病,其特征是在数月定期进行无保护措施的后 >= 12\geq 12 未能怀孕
Infertility is defined as a disease because of its effect on the quality of life, especially of women, as measured by levels of anxiety, depression, loss of self-esteem, and severe social effects, including stigmatisation, marital instability, social discrimination, neglect, isolation, and abuse 不孕症被定义为一种疾病,因为它对生活质量的影响,尤其是女性的生活质量,以焦虑、抑郁、自尊丧失和严重的社会影响水平来衡量,包括耻辱、婚姻不稳定、社会歧视、忽视、孤立和虐待
Assisted reproductive technology is the only treatment for some of the most common and severe causes of infertility. It is also increasingly used for family building by people in non-heterosexual unions; 辅助生殖技术是治疗一些最常见和最严重不孕症原因的唯一方法。它也越来越多地被非异性恋结合的人用于家庭建设;
for the prevention of inheritable genetic disorders; and for fertility preservation before cancer treatment or to extend the reproductive lifespan 用于预防可遗传的遗传疾病;以及为了在癌症治疗前保持生育能力或延长生育寿命
Wider and more equitable access to assisted reproduction helps to reduce the burden of disease, supports the reproductive health and rights of those unable to have the children they desire, and advances reproductive justice 更广泛、更公平地获得辅助生殖有助于减轻疾病负担,支持那些无法生育他们想要的孩子的人的生殖健康和权利,并促进生殖正义
Assisted reproduction exemplifies how breakthrough technological advances can rapidly spread around the globe, resulting simultaneously in remarkable progress and very unequal access (fig 1). Though the technology cannot guarantee success, over 10 million babies were born globally through assisted reproduction between the first birth in 1978 and 2018, most in high income countries. ^(23){ }^{23} In Spain and Denmark, for example, assisted reproductive technology accounted for 8.9% and 6.3%, respectively, of national births in 2019. ^(3){ }^{3} However, the greater use of assisted reproductive technology in high income countries is not representative of the global need, since the prevalence of infertility is similar among world regions ^(4){ }^{4} and having children is important to most societies. ^(5){ }^{5} 辅助生殖体现了突破性技术进步如何在全球范围内迅速传播,同时导致显着的进步和非常不平等的获取(图 1)。尽管这项技术不能保证成功,但在 1978 年至 2018 年首次出生期间,全球有超过 1000 万婴儿通过辅助生殖出生,其中大多数在高收入国家。 ^(23){ }^{23} 例如,在西班牙和丹麦,辅助生殖技术分别占 2019 年全国出生人数的 8.9% 和 6.3%。 ^(3){ }^{3} 然而,高收入国家更多地使用辅助生殖技术并不能代表全球需求,因为世界各地区不孕症的患病率相似 ^(4){ }^{4} ,并且生孩子对大多数社会都很重要。 ^(5){ }^{5}
Fig 1 | Global use of assisted reproduction (cycles per million population) by country, 2018^(2)2018^{2} 图 1 |按国家/地区 2018^(2)2018^{2} 划分的全球辅助生殖使用情况(每百万人口的循环次数),
Unequal access to any form of medical care despite similar needs is inequitable and, if avoidable by reasonable social action, unfair. ^(6){ }^{6} For assisted 尽管有类似的需求,但获得任何形式的医疗服务的不平等都是不公平的,如果可以通过合理的社会行动来避免,也是不公平的。 ^(6){ }^{6} 对于辅助
reproduction the three major drivers of inequity are affordability, demographic trends, and sociocultural norms. More equitable access requires not a 再生产 不平等的三个主要驱动因素是负担能力、人口趋势和社会文化规范。更公平的准入不需要
prioritisation of one intervention over another, but a harmonising of societal priorities and individual needs. Harmonisation requires the recognition of reproductive rights as a societal pillar. Each society then has to find its own equilibrium, balancing gains, trade-offs, and opportunity costs of societal needs and individual rights. 将一种干预措施置于另一种干预措施之上,但要协调社会优先事项和个人需求。协调需要承认生殖权利是社会支柱。然后,每个社会都必须找到自己的平衡点,平衡社会需求和个人权利的收益、权衡和机会成本。
Drivers of inequity 不平等的驱动因素
Affordability 经济实惠
Public funding for assisted reproduction is generally available only in high income countries. However, not all high income countries offer funding, and socioeconomic differences affect access. ^(78){ }^{78} Assisted reproduction in low and middle income countries is almost exclusively paid out of pocket, and the cost for one treatment cycle usually exceeds the average annual income per capita, often by far. ^(9){ }^{9} This makes treatment inaccessible for most people or causes catastrophic expenditure. ^(910){ }^{910} 辅助生殖的公共资金通常仅在高收入国家可用。然而,并非所有高收入国家都提供资金,社会经济差异会影响获得机会。 ^(78){ }^{78} 在低收入和中等收入国家,辅助生殖几乎完全是自掏腰包支付的,一个治疗周期的费用通常超过人均年收入,而且往往是迄今为止的。 ^(9){ }^{9} 这使得大多数人无法获得治疗或导致灾难性的支出。 ^(910){ }^{910}
Low affordability also increases risk as multiple embryos are often transferred to maximise the immediate chance of pregnancy. The resulting multiple pregnancies can jeopardise the health of the mother and offspring. In 2019, the rate of multiple delivery after assisted reproduction was 25.5%25.5 \% in Africa and 15.6%15.6 \% in Latin America but only 2.9%2.9 \% in Australia, where treatment is generously reimbursed by government. ^(11-13){ }^{11-13} Low affordability therefore creates additional inequities that affect women’s safety and the opportunities for children to enjoy the best possible start to life. 负担能力低也会增加风险,因为通常会转移多个胚胎以最大限度地提高怀孕的直接机会。由此产生的多胎妊娠可能会危及母亲和后代的健康。2019 年,辅助生殖后多胎分娩的比率在非洲和 15.6%15.6 \% 拉丁美洲, 25.5%25.5 \% 但仅限于 2.9%2.9 \% 澳大利亚,那里的治疗由政府慷慨报销。 ^(11-13){ }^{11-13} 因此,低负担能力造成了额外的不平等,影响了女性的安全和儿童享受最佳人生开端的机会。
Demographic trends 人口趋势
Since the mid-1960s, governmental and non-governmental organisations around the world, including WHO and associated partners, have directed substantial human and economic resources to controlling population growth, with particular focus on low and middle income countries. ^(14){ }^{14} This has benefited humankind, slowing population growth and unwanted fertility. It has also obscured infertility as an important public health concern, mainly because infertility has commonly been considered an individual problem rather than a societal concern. Today, the decline in total fertility rates is prompting many governments to reconsider this perspective and take action to promote fertility, especially in high income countries. ^(15){ }^{15} Advocating for greater access to assisted reproduction on grounds of low fertility rates, however, risks bypassing, again, 自 1960 年代中期以来,世界各地的政府和非政府组织,包括世卫组织和相关合作伙伴,已将大量人力和经济资源用于控制人口增长,特别关注低收入和中等收入国家。 ^(14){ }^{14} 这造福了人类,减缓了人口增长和不必要的生育能力。它还掩盖了不孕症作为一个重要的公共卫生问题,主要是因为不孕症通常被认为是个人问题,而不是社会问题。今天,总生育率的下降促使许多政府重新考虑这一观点并采取行动提高生育率,尤其是在高收入国家。 ^(15){ }^{15} 然而,以低生育率为由倡导更多获得辅助生殖的机会,有可能再次绕过,
the needs of people in lower income countries, not all of which have low fertility rates. 低收入国家人民的需求,并非所有国家的生育率都较低。
Sociocultural norms 社会文化规范
A third powerful driver of inequity stems from sociocultural norms, including those generated by religion. These norms, especially in low and middle income countries, often mandate parenthood, exerting social disapproval of infertility without, paradoxically, creating public policy for its prevention or treatment. Cultural approval of assisted reproduction in society is similarly influential and has a greater role in between country variation in use of the techniques than country wealth. ^(16){ }^{16} 不平等的第三个强大驱动力源于社会文化规范,包括宗教产生的规范。这些规范,特别是在低收入和中等收入国家,往往强制要求为人父母,造成社会对不孕症的反对,但矛盾的是,却没有制定预防或治疗不孕症的公共政策。社会对辅助生殖的文化认可同样具有影响力,并且在国家之间使用这些技术的差异中比国家财富的作用更大。 ^(16){ }^{16}
Liberal societies that allow considerable individual autonomy are witnessing a growing demand for assisted reproduction from people with diverse gender identities and sexual orientations. By contrast, a stable heterosexual relationship was a prerequisite for treatment in 43 of 88 countries participating in a survey by the International Federation of Fertility Societies, many of which also reported civil and criminal penalties for non-compliance. ^(17-19){ }^{17-19} In most Muslim countries, assisted reproduction is permitted only for infertile married couples, with use of donors and surrogates religiously prohibited. ^(20){ }^{20} The Vatican still prohibits all reproductive technology, ^(21){ }^{21} causing various restrictions on assisted reproduction services across the Catholic world. 允许相当大的个人自主权的自由社会正在见证具有不同性别认同和性取向的人对辅助生殖的需求不断增长。相比之下,在参与国际生育协会联合会 (International Federation of Fertility Societies) 的一项调查的 88 个国家中,有 43 个国家的稳定异性恋关系是治疗的先决条件,其中许多国家还报告了对不遵守规定的民事和刑事处罚。 ^(17-19){ }^{17-19} 在大多数穆斯林国家,仅允许不育的已婚夫妇进行辅助生殖,而宗教上禁止使用捐赠者和代孕者。 ^(20){ }^{20} 梵蒂冈仍然禁止所有生殖技术, ^(21){ }^{21} 导致整个天主教世界对辅助生殖服务产生各种限制。
Mismatch between societal priorities and individual reproductive rights 社会优先事项与个人生殖权利之间的不匹配
Family is the top ranking value in most countries worldwide (fig 2). Article 16 of the UN Declaration of Human Rights considers founding a family to be a basic human right. ^(22){ }^{22} The UN has refrained from defining family, thereby being open to diverse family structure and avenues of formation within and across societies. For many people who need assisted reproduction, the ability to realise their reproductive rights is strongly influenced by their socioeconomic status, as well as by the sociocultural norms and societal priorities that affect the reproduction of citizens. This impact is justifiable if we consider that it is the role of governments to act in the best interests of their societies, reflected by their needs. When allocating limited resources, it therefore seems reasonable to prioritise painful existence or avoidance of death before spending on future life. This places assisted reproduction at the end of a long queue of multiple disease burdens and the growing use of resources by an ageing population. Family 是全球大多数国家/地区排名最高的值(图 2)。联合国人权宣言第 16 条认为建立家庭是一项基本人权。 ^(22){ }^{22} 联合国没有定义家庭,因此对社会内部和跨社会的不同家庭结构和形成途径持开放态度。对于许多需要辅助生殖的人来说,实现生殖权利的能力受到其社会经济地位以及影响公民生殖的社会文化规范和社会优先事项的强烈影响。如果我们认为政府的职责是为社会的最佳利益行事,这反映在他们的需求上,那么这种影响是合理的。因此,在分配有限的资源时,优先考虑痛苦的存在或避免死亡,然后再花钱给来世,这似乎是合理的。这使得辅助生殖处于多种疾病负担的长队和老龄化人口对资源的日益使用。
Fig 2 | Importance of family in ranking of values. Data from the World Values Survey Wave 6: 2010-2014, redrawn from Knoema with permission 图 2 |家庭在价值观排名中的重要性。数据来自世界价值观调查第 6 波:2010-2014 年,经许可转自 Knoema
More controversial would be the notion that limiting access helps to selectively curb fertility rates in certain settings or among particular groups. ^(2324){ }^{2324} Some countries have restricted access to treatment on the grounds of protecting society’s moral values. For example, the Constitutional Court of Costa Rica banned assisted reproduction in 2000, stating that it violated human dignity and the right of the human embryo to life. ^(25){ }^{25} However, the ban was overturned by the Inter-American Court of Human Rights (box 2). Similarly, the restriction of assisted reproduction to married, heterosexual couples in many African countries can be seen as aligned with Africa’s human rights charter, which obliges states to protect the physical and moral health of the family. ^(26){ }^{26} It allows, however, each country to decide autonomously which morals to protect. These examples reflect the opportunities and difficulties in incorporating international rights principles into national constitutional bodies and policies. 更具争议的是,限制可及性有助于在某些环境或特定群体中选择性地抑制生育率。 ^(2324){ }^{2324} 一些国家以保护社会道德价值观为由限制获得治疗。例如,哥斯达黎加宪法法院于 2000 年禁止辅助生殖,称它侵犯了人类尊严和人类胚胎的生命权。 ^(25){ }^{25} 然而,该禁令被美洲人权法院推翻(框 2)。同样,在许多非洲国家,将辅助生殖限制在已婚异性恋夫妇身上,可以被视为符合非洲的人权宪章,该宪章要求各国保护家庭的身心健康。 ^(26){ }^{26} 然而,它允许每个国家自主决定保护哪些道德。这些例子反映了将国际人权原则纳入国家宪法机构和政策的机遇和困难。
Box 2: 2012 Inter-American Court of Human Rights ruling on access to assisted reproduction 插文 2:2012 年美洲人权法院关于获得辅助生殖的裁决
In 2000, the Constitutional Court of Costa Rica banned assisted reproduction on the grounds that it violated human dignity and the right to life of the human embryo. In response, citizens of Costa Rica approached the Inter-American Court of Human Rights (IACHR). Taking social and medical science evidence strongly into consideration, the IACHR established that the ban violated several human rights. These included the right to personal integrity; to private and family life; to found a family; and to reproductive autonomy. Furthermore, the IACHR found evidence of discrimination on grounds of disability, financial means, and gender, since women were disproportionally affected. 2000 年,哥斯达黎加宪法法院禁止辅助生殖,理由是它侵犯了人类尊严和人类胚胎的生命权。作为回应,哥斯达黎加公民向美洲人权法院 (IACHR) 求助。美洲人权委员会充分考虑了社会和医学证据,确定该禁令侵犯了多项人权。这些权利包括个人完整权;私人和家庭生活;组建家庭;以及生殖自主权。此外,美洲国家间人权委员会还发现了基于残疾、经济能力和性别的歧视证据,因为妇女受到了不成比例的影响。
Costa Rica was instructed to implement assisted reproduction services, including in the public health sector; to monitor their quality; to educate the judiciary on reproductive rights; and to make reparations to the claimants. Today, Costa Rica is one of 16 countries reporting to the Latin American registry for assisted reproduction, which monitors availability, use, practices, and outcomes of treatment in the region. 哥斯达黎加被指示实施辅助生殖服务,包括在公共卫生部门;监控其质量;对司法机构进行生殖权利教育;并向索赔人作出赔偿。今天,哥斯达黎加是向拉丁美洲辅助生殖登记处报告的 16 个国家之一,该登记处负责监测该地区的治疗可用性、使用、做法和结果。
Where societal interests and individual reproductive rights are aligned, such as in many European countries, access to fertility 在社会利益和个人生殖权利一致的地方,例如在许多欧洲国家,获得生育权
education and contraception is well balanced with access to infertility treatments, including assisted reproduction. Problems arise when societal interests confront or negate the reproductive rights of individuals to enjoy the benefits of medical science in founding families. These problems are amplified when the disease burden of infertility is neglected or unrecognised. In Bangladesh, for example, health policy focus has been on fertility control and infertility has been neglected. However, parenthood is socially mandated and infertility has strong social repercussions, especially for women, who may face multiple exclusions from family, society, and healthcare. ^(27){ }^{27} Numerous other examples, especially from low and middle income countries, tell a story of multiple social consequences including stigmatisation, marital instability, discrimination, neglect, isolation, and abuse. Untreated infertility can disrupt family and community structures, and in many settings infertility remains attributed to wrongful behaviour, especially from women, rather than to a disease. ^(1428){ }^{1428} Acknowledging the enormous effect on individuals’ health, lives, and rights, the UN Office on Human Rights’ revised definition of reproductive rights underscores that states must take steps to prevent infertility and ensure access to treatment. ^(29){ }^{29} 教育和避孕与获得不孕症治疗(包括辅助生殖)取得了很好的平衡。当社会利益对抗或否定个人在建立家庭时享受医学科学好处的生殖权利时,问题就会出现。当不孕症的疾病负担被忽视或未被认识到时,这些问题就会被放大。例如,在孟加拉国,卫生政策的重点一直放在生育控制上,而不孕症被忽视了。然而,为人父母是社会规定的,不孕症具有强烈的社会影响,尤其是对女性而言,她们可能面临被家庭、社会和医疗保健排除在外的多重排斥。 ^(27){ }^{27} 许多其他例子,特别是来自低收入和中等收入国家的例子,讲述了多种社会后果的故事,包括污名化、婚姻不稳定、歧视、忽视、孤立和虐待。未经治疗的不孕症会破坏家庭和社区结构,在许多情况下,不孕症仍然归因于错误行为,尤其是女性的行为,而不是疾病。 ^(1428){ }^{1428} 联合国人权高专办(UN Office on Human Rights)修订后的生殖权利定义承认生殖权利对个人健康、生活和权利的巨大影响,强调各国必须采取措施预防不孕症并确保获得治疗。 ^(29){ }^{29}
Pillar of harmonious human development 和谐人类发展的支柱
Human rights should be the foundation of all human development. ^(30){ }^{30} For people with infertility, harmonisation of personal and societal rights must start by recognising that reproductive rights are human rights. ^(30){ }^{30} The right to found a family does not imply free access to assisted reproduction. However, the right to the highest attainable standard of health does oblige governments to provide healthcare that is available, accessible, acceptable, and of quality, and, subject to available resources, to promote the highest attainable health progressively and without discrimination. ^(30){ }^{30} Where the available healthcare includes advanced technology, reproductive rights mandate access to assisted reproduction on an equitable basis with other health services. Simultaneously, the high disease burden requires attention if countries are serious about advancing the reproductive health of their citizens. 人权应该是所有人类发展的基础。 ^(30){ }^{30} 对于不孕症患者来说,协调个人权利和社会权利必须首先承认生殖权利是人权。 ^(30){ }^{30} 建立家庭的权利并不意味着可以免费获得辅助生殖。然而,享有可达到的最高健康标准的权利确实要求政府提供可获得、可及、可接受和高质量的医疗保健,并在可用资源的情况下,逐步、无歧视地促进可达到的最高健康。 ^(30){ }^{30} 在可用的医疗保健包括先进技术的情况下,生殖权利要求在公平的基础上与其他卫生服务一起获得辅助生殖。同时,如果各国认真对待促进其公民的生殖健康,就需要关注高疾病负担。