Division of Tropical Health and Medicine, James Cook University, Cairns, QLD, Australia.
MJD Foundation, Alyangula, NT, Australia.
Int J Equity Health. 2024 Sep 18;23(1):187. doi: 10.1186/s12939-024-02228-x.
Managing genetic disease using medically assisted reproductive technology is increasingly promoted as a feasible option, given revolutionary advances in genomics. Far less attention has been directed to the issue of whether there is equitable access to this option. Context and circumstance determine equitable access; however, reporting has drawn overwhelmingly from affluent Anglo-western populations in developed countries. The experiences of poorer, less educated subpopulations within affluent countries and populations in less developed countries are underreported. The ability of consumers to understand the opportunities and risks of medically assisted reproductive technology is likewise not well described in the literature despite significant technological complexity and evidence that genetic disease may be overrepresented within some disadvantaged population groups.Equity is achieved by identifying barriers and allocating appropriate resources to enable understanding and access. In the case of utilising medically assisted technology, social and power relationships, regulations, and the presumptions of authority figures and policymakers reduce equitable access. Physical or cultural marginalisation from mainstream health services may result in reduced access to genetic and prenatal testing, in-vitro fertilisation and genetic screening of embryos necessary for medically assisted reproduction. Cost and regulatory frameworks can likewise limit opportunities to engage with services. Moreover, the quality of the information provided to prospective users of the technology and how it is received governs understanding of prevention and inhibits adequately informed choice.Best practice care and adequately informed choice can only be achieved by conscientiously attending to these accessibility issues. Deep engagement with at-risk people and critical reflection on mainstream accepted standpoints is required. This paper outlines issues associated with engaging with medically assisted reproduction encountered by Aboriginal families living with Machado-Joseph Disease in some of the most remote areas of Australia. It is the right of these families to access such technologies regardless of where they live. Current barriers to access raise important questions for service providers with implications for practice as new technologies increasingly become part of standard medical care.
利用医学辅助生殖技术来管理遗传疾病,由于基因组学的革命性进步,这种方法越来越被视为可行的选择。然而,人们很少关注是否能够公平地获得这种选择。背景和环境决定了公平获取的机会;然而,报告主要来自富裕的盎格鲁-西方发达国家的人群。在富裕国家的贫困、受教育程度较低的亚人群以及欠发达国家的人群中,这种情况的报道较少。尽管医学辅助生殖技术具有显著的技术复杂性,并且有证据表明遗传疾病可能在某些弱势群体中更为普遍,但消费者理解该技术的机会和风险的能力在文献中也没有得到很好的描述。通过确定障碍并分配适当的资源来实现公平,从而实现公平。在利用医学辅助技术的情况下,社会和权力关系、法规以及权威人士和政策制定者的假设会减少公平获取的机会。从主流医疗服务中受到身体或文化上的边缘化,可能会导致遗传和产前测试、体外受精以及胚胎的基因筛查等必要的医学辅助生殖技术的获取减少。成本和监管框架同样可能限制与服务接触的机会。此外,向技术的潜在使用者提供的信息的质量以及如何接收这些信息,也会影响对预防的理解并限制充分知情的选择。只有认真关注这些可及性问题,才能实现最佳实践护理和充分知情的选择。需要与高危人群深入接触,并对主流接受的观点进行批判性反思。无论他们居住在哪里,这些家庭都有权获得这些技术。目前获取这些技术的障碍给服务提供者提出了一些重要的问题,这对实践具有影响,因为新技术越来越成为标准医疗护理的一部分。