We are analyzing https://link.springer.com/article/10.1007/s00335-024-10080-1.

Title:
Preclinical research (on rare diseases): we need to talk about health equity | Mammalian Genome
Description:
There is a thriving, worldwide, biomedical research community working to understand the molecular bases of diseases of all types, continuously driving improved diagnostics and therapies. Developments in genetics and experimental medicine are yielding novel genetic therapies that were hardly dreamt of 40 years ago. But along with these scientific achievements, there exist challenges in ensuring that 21st century medical interventions are accessible to all who need them. This perspective will discuss how preclinical research, with a focus on rare diseases, can better contribute to healthcare ecosystems that are oriented towards greater health equity. This contribution may require changes to the prevailing scientific research culture that will need support from relevant institutions and the wider community.
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28 years and 1 months (reg. 1997-05-29).

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Keywords {🔍}

research, health, pubmed, equity, article, preclinical, disease, human, google, scholar, models, diseases, genome, rare, social, genetic, central, access, scientific, clinical, ethical, data, editing, nature, important, cas, therapies, interventions, scientists, medicine, disparities, national, funding, biomedical, healthcare, relevant, global, rds, common, communities, cancer, review, med, including, greenfield, community, international, cell, sciences, role,

Topics {✒️}

article download pdf patient-derived xenograft models expanding patient-derived models crispr/cas9 gene therapy genome-editing based therapies conventional harm-benefit analyses pre-clinical research scientists exome/genome sequencing programmes low-middle income countries profit-driven private companies genome editing-based treatment high-tech genetic interventions editing mammalian genomes macias-konstantopoulos andy greenfield article greenfield privacy choices/manage cookies human genome editing society-oriented policy initiatives address inequitable access genome sequencing programmes low-birthweight offspring central consideration cerebral organoid model �health equity statement sex-related reporting inadequate clinical management detailed functional studies biomedical scientific research research ethics reviews research ethics committees cancer genome atlas requires removing obstacles distinct upstream mutations endogenous murine equivalent encourage ethical curiosity term societal implications el-hattab aw lower-income nations apoe3ch alleviates abeta fda approves casgevy special issue fuel preclinical research preclinical research models preclinical research efforts biomedical research institute research assessment exercises implementing clinical trials innovative healthcare equitably patient-derived organoids

Questions {❓}

2024): the use of risky interventions and whether they are justified, funding allocations and even the likelihood of charitable donations are all likely to have seriousness – especially ‘life-threatening or not?
Has biological sex – and sex bias in research – also played a role and does it continue to do so?
How common is training for life scientists in subjects such as bioethics, sociology and philosophy?
How many research institutes, where fundamental and applied preclinical research occurs, are actively reaching out to minority communities?
Is infertility a neglected disease?
Is it an ecosystem that is fit for purpose?
Is the particular source justified?
Just to generate publishable biological data?
Kleiderman E, Boardman F, Newson AJ, Laberge AM, Knoppers BM, RAVITSKY V (2024) Unpacking the notion of serious genetic conditions: towards implementation in reproductive decision-making?
Might there be a social scientist ‘in residence’ at a biomedical research institute, occasionally, to act as a ‘critical friend’, discuss governance and society-oriented policy initiatives and generally aid with training in bioethics?
We should encourage ethical curiosity amongst scientists – ‘why should we do this, but not this?
What roles are played (and have been played historically) by ethnicity and geographical location in such accessibility and associated health disparities?

Schema {🗺️}

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         headline:Preclinical research (on rare diseases): we need to talk about health equity
         description:There is a thriving, worldwide, biomedical research community working to understand the molecular bases of diseases of all types, continuously driving improved diagnostics and therapies. Developments in genetics and experimental medicine are yielding novel genetic therapies that were hardly dreamt of 40 years ago. But along with these scientific achievements, there exist challenges in ensuring that 21st century medical interventions are accessible to all who need them. This perspective will discuss how preclinical research, with a focus on rare diseases, can better contribute to healthcare ecosystems that are oriented towards greater health equity. This contribution may require changes to the prevailing scientific research culture that will need support from relevant institutions and the wider community.
         datePublished:2024-10-26T00:00:00Z
         dateModified:2024-10-26T00:00:00Z
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      headline:Preclinical research (on rare diseases): we need to talk about health equity
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         Preclinical models of disease
         Animal models
         Organoid models
         Precision medicine and care
         Ethics of healthcare equity
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         Animal Genetics and Genomics
         Human Genetics
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