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Person-oriented ethics for autism research: Creating best practices through engagement with autism and autistic communities.

M Ariel CascioJonathan A WeissEric Racinenull null
Published in: Autism : the international journal of research and practice (2020)
Research ethics means issues that concern the welfare and wellbeing of people who take part in research. It is important in all scientific studies. Ethics helps people who do research treat people who take part in research fairly and with respect. This article is about day-to-day ethics when autistic people take part in research. We present tips for researchers who want to do this type of study.We used two methods to create these tips. First, we wanted to know what other people said about this topic. We used a literature review to find out. Second, we wanted to know what autistic people, parents, and professionals thought, and had a working group meet to discuss it. The working group provided advice that researchers could consider around day-to-day ethics in research. This article talks about these methods and advice. The advice fits into five big groups:Tailor the research process for the unique needs of each person.Think about the world in which people who take part in research live.Make it easier for people to make their own choices.Value what people who take part in research have to share and consider their needs and strengths.Think about how researchers and people who take part in research work together.This project shows why it is useful for researchers and communities to talk about research ethics together.
Keyphrases
  • big data
  • public health
  • global health
  • autism spectrum disorder
  • artificial intelligence
  • machine learning
  • intellectual disability
  • primary care
  • healthcare
  • case control