Cybergenetics: Health Genetics and New Media

ISBN-13: 9781138351936 / Angielski / Miękka / 2018 / 158 str.

Susan Kelly; Anna Harris; Sally Wyatt

Opis

This critical social science monograph examines direct-to-consumer genetic testing. Focusing on disease testing, it asks, what new social arrangements emerge when a traditionally clinical practice (genetic testing) is taken into new spaces (the internet).

Spis treści

1. Introduction: CyberGenetics  1.1. Brief history of direct-to-consumer genetic testing  1.2. Brief history of the internet and health online  1.3. Intersecting determinisms: When genetic testing goes online  1.4. New spaces for health-e relations?  1.5. Changing relations of trust, in bodies, expertise, science, technology  1.6. Overview of book  1.7. Apple falls from the tree  2. Users  2.1. Patients-in-waiting  2.2. Celebrity users  2.3. Non-celebrity users  2.4. Potential users and non-users  2.5. Conclusion  3. Professionals  3.1. Genetic counselling online: Co-production of users and technologies  3.2. Representations of genetic counselling by DTC genetic testing companies 3.3. Models of genetic counselling provision  3.4. Genetic counselling roles  3.5. New roles for genetic counselors  3.6. Conclusion  4. Participation  4.1. The participatory turn?  4.2. Novel methods: The ‘research-y’ part of 23andMe  4.3. 23andMe’s ‘participatory culture’  4.4. Sharing gifts under the genetic family tree  4.5. Reciprocal ties  4.6. Spitting for free  4.7. Conclusion  5. Controversy  5.1. Schizophrenia genetics  5.2. Controversy goes online  5.3. Selling genetic tests online for schizophrenia  5.4. Controversy in action: Citation and production of knowledge  5.5. Conclusion  6. Conclusion: CyberGenetic futures  6.1. Preventive Measures  6.2. Letters from the lake  6.3. GenULuv announces entry to stock market  6.4. Online Genetic Testing: An archaeological assessment  Appendix A: New media, new genetics, new methods  A.1. Methodological choices made in preparation of this book  A.2. Finding material online: Ethics of using self-reported data  A.3. Ontological issues of finding participants and defining ‘users’  A.4. The internet is not the world: Epistemological considerations of online research  A.5. Future directions  Appendix B: List of DTC genetic testing websites