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The three chapters in this Part of the book take an interesting turn from the rest of the book, one akin to a jumping off a flat page and into a new dimension, a new universe. These three chapters are not, primarily, about consuming genomics, but about how people, often consumers, who are not “the usual suspects,” are producing genomics, sometimes their own genomics. And, as in science fiction (and perhaps in science fact), the laws of nature are not necessarily the same in parallel universes, so the human laws dealing with this space – whether called DIY gene editing, nontraditional gene editing, or genetic biohacking – are not quite the same as those in the consuming space.
For the average person genetic testing has two very different faces: the rise of genetic testing is promoted as the democratization of genetics by enabling individuals to gain new insights into their unique makeup. At the same time, many regard genetic testing and sequencing as revealing something intensely personal and private about themselves. Genetic testing raises legal and ethical questions that loom ever larger, especially as genetic testing is becoming more commonplace, affordable, and comprehensive. Already in 2018 the global genetic testing and consumer/wellness genomics market was valued at $3.4 billion, with market analysts in 2019 predicting that it will double in value by 2025.
For the average person, genetic testing has two very different faces. The rise of genetic testing is often promoted as the democratization of genetics by enabling individuals to gain insights into their unique makeup. At the same time, many have raised concerns that genetic testing and sequencing reveal intensely personal and private information. As these technologies become increasingly available as consumer products, the ethical, legal, and regulatory challenges presented by genomics are ever looming. Assembling multidisciplinary experts, this volume evaluates the different models used to deliver consumer genetics and considers a number of key questions: How should we mediate privacy and other ethical concerns around genetic databases? Does aggregating data from genetic testing turn people into products by commercializing their data? How might this data reduce or exacerbate existing healthcare disparities? Contributing authors also provide guidance on protecting consumer privacy and safety while promoting innovation.
Direct-to-Consumer (“DTC”) genomics has been a controversial topic for over a decade. Much work has been done on the legal issues it raises. This article asks a different question: What will DTC genomics and its legal issues look like in ten to twenty years? After discussing the five current uses of DTC genomics, it describes three current legal issues: medical uses, privacy of genomic information, and privacy in collection and analysis of human DNA. It then suggests that changes in human genomics and how it is used will make the first of those DTC genomics legal issues less important in the future, but that the third will be increasingly significant.
Human genomics is a translational field spanning research, clinical care, public health, and direct-to-consumer testing. However, law differs across these domains on issues including liability, consent, promoting quality of analysis and interpretation, and safeguarding privacy. Genomic activities crossing domains can thus encounter confusion and conflicts among these approaches. This paper suggests how to resolve these conflicts while protecting the rights and interests of individuals sequenced. Translational genomics requires this more translational approach to law.
Drawing on a landscape analysis of existing data-sharing initiatives, in-depth interviews with expert stakeholders, and public deliberations with community advisory panels across the U.S., we describe features of the evolving medical information commons (MIC). We identify participant-centricity and trustworthiness as the most important features of an MIC and discuss the implications for those seeking to create a sustainable, useful, and widely available collection of linked resources for research and other purposes.
“Illustration” or “map” are among the most frequently used words for translating the Chinese character tu, a graphic representation of any phenomenon that can be pictured in life and society, whether in traditional China or elsewhere. Investigations of the early role of tu in Chinese culture first set out to answer questions about who produced tu, the background of its originator, and the originator's purpose. How were pictures conceptualized? Interpreted? In examining tu, Chinese scholars stressed the relational aspect of tu and shu (writing) to answer both these questions, as well as to the importance of not robbing an image of its overall beauty and life with too much graphic detail. In the West, specific concepts of technical or scientific illustrations did not exist before the Renaissance. With the coming of that age, technical illustration became a specific branch of knowledge and activity, with its own specific goals and ends.
“The sins of the fathers are to be laid upon the children.”
Just after midnight on March 21, 2003, a drunk stood on a footbridge over a motorway in a village in Surrey in southern England. After eight pints of beer, he was drunk enough to decide to drop a brick from the overpass into traffic to see if he could hit something; unfortunately, he was not so drunk that he missed. The brick crashed through the windshield on the driver's side of a truck. It hit the driver, Michael Little, in the chest, triggering a fatal heart attack. He stayed conscious long enough to pull the truck safely to the side of the road, thereby perhaps saving other motorists; then he died. The crime was widely publicized, as was the driver's role in preventing any further accidents.
True revolutions turn the entire world upside down, in ways expected and surprising, profound and mundane. The revolution spawned by advances in molecular biology is no exception. Most of the attention has gone, deservedly, to the possible effects of these advances on medicine, on society, and on our understanding of what it means to be human. But the revolution has already had effects—large and small, good and bad—in other areas. This paper analyzes one aspect of the industry created by that revolution in molecular biology–biotechnology. Specifically, it surveys the various kinds of conflicting interests, both real and perceived, that develop among commercial enterprises, government, and institutions in biotechnology; and it examines the legal implications and public policy concerns of these conflicting interests.
The paper focuses on three different kinds of conflicting interests that confront private and public enterprises competing or collaborating in the biotechnology industry: (1) those among businesses involved within the industry; (2) those in relationships between industry and government; and (3) those in relationships between industry and universities. These types of conflicts raise very different issues, but each stems from circumstances unique to the young biotechnology industry.
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