Contributing to an autism biobank: Diverse perspectives from autistic participants, family members and researchers

A lot of autism research has focused on finding genes that might cause autism. To conduct these genetic studies, researchers have created 'biobanks' - collections of biological samples (such as blood, saliva, urine, stool and hair) and other health information (such as cognitive assessments and medical histories). Our study focused on the Australian Autism Biobank, which collected biological and health information from almost 1000 Australian autistic children and their families. We wanted to know what people thought about giving their information to the Biobank and why they chose to do so. We spoke to 71 people who gave to the Biobank, including 18 autistic adolescents and young adults, 46 of their parents and seven of their siblings. We also spoke to six researchers who worked on the Biobank project. We found that people were interested in giving their information to the Biobank so they could understand why some people were autistic. Some people felt knowing why could help them make choices about having children in the future. People also wanted to be involved in the Biobank because they believed it could be a resource that could help others in the future. They also trusted that scientists would keep their information safe and were keen to know how that information might be used in the future. Our findings show that people have lots of different views about autism biobanks. We suggest researchers should listen to these different views as they develop their work

“Peas in a pod”: Oral History Reflections on Autistic Identity in Family and Community by Late-Diagnosed Adults

In this paper, we report on a participatory oral history study documenting the lives of late-diagnosed autistic adults in Australia. We interviewed 26 autistic adults about their life history and the impact of late diagnosis. All were diagnosed after the age of 35, growing up in an era when autism was not well known. Using reflexive thematic analysis, we uncovered a rich body of reflections on shared Autistic identity and identified three major themes within that data set: 'conceptualising the Autistic family', 'creating Autistic community', and 'contesting Autistic identity'. Overall, the study provides insights into the active creation of shared Autistic identity and the importance of Autistic community to these late-diagnosed autistic adults

Computation of the entropy of polynomials orthogonal on an interval.

We give an effective method to compute the entropy for polynomials orthogonal on a segment of the real axis that uses as input data only the coefficients of the recurrence relation satisfied by these polynomials. This algorithm is based on a series expression for the mutual energy of two probability measures naturally connected with the polynomials. The particular case of Gegenbauer polynomials is analyzed in detail. These results are applied also to the computation of the entropy of spherical harmonics, important for the study of the entropic uncertainty relations as well as the spatial complexity of physical systems in central potentials

Making race: Biology and the evolution of the race concept in 20th century American thought

At the dawn of the 21st century the idea of race—the belief that the peoples of the world can be organized into biologically distinctive groups, each with its own discrete physical, social and intellectual characteristics—is seen by most natural and social scientists as unsound and unscientific. Race and racism, while drawn from the visual cues of human diversity, are ideas with a measurable past, identifiable present, and uncertain future. They are concepts that change with time and place; the changes themselves products of a range of variables including time, place, geography, politics, science, and economics. As much as scientists once thought that race and racism were reflections of physical or biological differences, today social scientists, with help from colleagues in the natural sciences, have shown that the once scientific concept of race is in fact a product of history with an unmistakable impact on the American story. This dissertation examines the history of the biological race concept during the 20th century, studying how the biological sciences helped to shape thinking about human difference. This work argues that in the 20 th century biology and genetics became the arbiter of the meaning of race. This work also brings the story of the evolution of the race concept to the present by examining the early impact of the genomic sciences on race, and by placing it in a contemporary public health context

Taking race out of human genetics

In the wake of the sequencing of the human genome in the early 2000s, genome pioneers and social scientists alike called for an end to the use of race as a variable in genetic research (1, 2). Unfortunately, by some measures, the use of race as a biological category has increased in the postgenomic age (3). Although inconsistent definition and use has been a chief problem with the race concept, it has historically been used as a taxonomic categorization based on common hereditary traits (such as skin color) to elucidate the relationship between our ancestry and our genes. We believe the use of biological concepts of race in human genetic research—so disputed and so mired in confusion—is problematic at best and harmful at worst. It is time for biologists to find a better way

Social Media, Public Health Research, and Vulnerability: Considerations to Advance Ethical Guidelines and Strengthen Future Research

The purpose of this article is to build upon prior work in social media research and ethics by highlighting an important and as yet underdeveloped research consideration: how should we consider vulnerability when conducting public health research in the social media environment? The use of social media in public health, both platforms and their data, has advanced the field dramatically over the past 2 decades. Applied public health research in the social media space has led to more robust surveillance tools and analytic strategies, more targeted recruitment activities, and more tailored health education. Ethical guidelines when using social media for public health research must also expand alongside these increasing capabilities and uses. Privacy, consent, and confidentiality have been hallmarks for ethical frameworks both in public health and social media research. To date, public health ethics scholarship has focused largely on practical guidelines and considerations for writing and reviewing social media research protocols. Such ethical guidelines have included collecting public data, reporting anonymized or aggregate results, and obtaining informed consent virtually. Our pursuit of the question related to vulnerability and public health research in the social media environment extends this foundational work in ethical guidelines and seeks to advance research in this field and to provide a solid ethical footing on which future research can thrive