Парадоксы генетического тестирования на онкологию: между контролем и риском

Anastasiia S. Ugarova

doi:10.21638//11701/spbu12.2018.108

Authors

Anastasiia S. Ugarova European University at St. Petersburg, 6/1 А, Gagariskaya str., St. Petersburg, 191187, Russian Federation https://orcid.org/0000-0002-7036-9810

DOI:

https://doi.org/10.21638//11701/spbu12.2018.108

Abstract

The 21st century is recognized as the age of genetics due to significant discoveries that have revolutionized the understanding of the human genome. This turn largely determined the possibilities of modern preventive medicine, including the ability to diagnose the likelihood of disease on the basis of analysis of human genes. For cancer treatment, a serious disease recognized as socially significant, these discoveries provided new resources in the fight against the disease, which, ultimately, should lead to a reduction in morbidity and mortality. However, the emergence of this treatment technology has offered new questions related to ethical, social, economic, cultural and other aspects of genetic testing for cancer susceptibility. The article is devoted to the social aspects of genetic testing for susceptibility to breast cancer (mutations in the BRCA1/2 genes). Readers are offered a brief overview of the existing research areas, and also proposed an analysis of the paradoxes arising due to the development of genetic testing technology.

Keywords:

empowerment, risk, oncology, genetic testing, cancer susceptibility, breast cancer

Downloads

Download data is not yet available.

References

Литература

Parsons T. The social system. Glencoe, IL: Free Press, 1951. 575 p.

Парсонс Т. Пересматривая роли больного и врача // Социология власти. 2016. Т. 28. № 1. С. 233–251.

World Health Organization, 2014. URL: http://www.who.int/cancer/country-profiles/rus_ru.pdf?ua=1 (дата обращения: 28.12.2017).

Conrad P., Gabe J. Introduction: Sociological perspectives on the new genetics: an overview //Sociology of Health & Illness. 1999. Vol. 21, N 5. P. 505–516.

Freidson E. Profession of medicine: A study of the sociology of applied knowledge. Chicago: University of Chicago Press, 1988. 440 p.

Баранов В. С. Геномика на пути к предиктивной медицине // Acta Naturae (русскоязычная версия). 2009. Т. 1, № 3. С. 77–88.

Aronowitz R. A. The converged experience of risk and disease // The Milbank Quarterly. 2009. Vol. 87, N 2. P. 417–442.

Armstrong D. The rise of surveillance medicine // Sociology of health & illness. 1995. Vol. 17, N 3. P. 393–404.

Aronowitz R. A. Unnatural history: Breast cancer and American society. New York: Cambridge University Press, 2007. 366 p.

Dean M. et al. “When information is not enough”: A model for understanding BRCA-positive previvors’ information needs regarding hereditary breast and ovarian cancer risk // Patient Education and Counseling. 2017. Vol. 100, N 9. P. 1738–1743.

Prior L. Talking about the gene for cancer: a study of lay and professional knowledge of cancer genetics // Sociology. 2007. Т. 41, N 6. P. 985–1001.

Cockerham W. C. Health Lifestyle Theory and the Convergence of Agency and Structure // Journal of Health and Social Behavior. 2005. Vol. 46, N 1. P. 51–67.

d’Agincourt-Canning L. Genetic testing for hereditary breast and ovarian cancer: Responsibility and choice // Qualitative Health Research. 2006. Vol. 16, N 1. P. 97–118.

Hesse-Biber S. Gender differences in psychosocial and medical outcomes stemming from testing positive for the BRCA1/2 genetic mutation for breast cancer: An explanatory sequential mixed methods study // Journal of Mixed Methods Research. 2016. https://doi.org/10.1177/1558689816655257.

Eccleston A. et al. A Cost-Effectiveness Evaluation of Germline BRCA1 and BRCA2 Testing in UK Women with Ovarian Cancer // Value in Health. 2017. Vol. 20, N 4. P. 567–576.

Hogarth S., Javitt G., Melzer D. The current landscape for direct-to-consumer genetic testing: legal, ethical, and policy issues // Annual Review of Genomics and Human Genetics. 2008. Vol. 9. P. 161–182.

Parthasarathy S. Architectures of genetic medicine: comparing genetic testing for breast cancer in the USA and the UK // Social Studies of Science. 2005. Vol. 35, N 1. P. 5–40.

Singer E., Antonucci T., Van Hoewyk J. Racial and ethnic variations in knowledge and attitudes about genetic testing // Genetic testing. 2004. Т. 8, N 1. P. 31–43.

Любченко Л. Н., Батенева Е. И., Воротников И. К., Портной С. М., Крохина О. В., Соболевский В. А., Жукова Л. Г., Хайленко В. А., Тюляндин С. А. Наследственный рак молочной железы: генетическая и клиническая гетерогенность, молекулярная диагностика, хирургическая профилактика в группах риска // Успехи молекулярной онкологии. 2014. № 2. С. 16–25.

Kenen R., Ardern-Jones A., Eeles R. Living with chronic risk: healthy women with a family history of breast/ovarian cancer // Health, Risk & Society. 2003. Vol. 5, N 3. P. 315–331.

Hesse-Biber S. Waiting for cancer to come: Women’s experiences with genetic testing and medical decision making for breast and ovarian cancer. Michigan: University of Michigan Press, 2014. 226 p.

Casper M. J., Morrison D. R. Medical sociology and technology: Critical engagements // Journal of Health and Social Behavior. 2010. Vol. 51, N 1. P. 120–132.

Akrich M., Pasveer B. Multiplying obstetrics: techniques of surveillance and forms of coordination // Theoretical medicine and bioethics. 2000. Vol. 21, N 1. P. 63–83.

Hallowell N. Doing the right thing: genetic risk and responsibility // Sociology of Health & Illness. 1999. Vol. 21, N 5. P. 597–621.

References

Parsons T. The social system. Glencoe, IL, Free Press, 1951. 575 p.

Parsons T. Peresmatrivaia roli bol’nogo i vracha [The Sick Role and the Role of Physician Reconsidered]. Sotsiologiia vlasti, 2016, vol. 28, no. 1, pp. 233–251. (In Russian)

World Health Organization, 2014. Available at: http://www.who.int/cancer/country-profiles/rus_ru.pdf?ua=1 (accessed: 28.12.2017).

Conrad P., Gabe J. Introduction: Sociological perspectives on the new genetics: an overview. Sociology of Health & Illness, 1999, vol. 21, no. 5, pp. 505–516.

Freidson E. Profession of medicine: A study of the sociology of applied knowledge. Chicago, University of Chicago Press, 1988. 440 p.

Baranov V. S. Genomika na puti k prediktivnoi meditsine [Genomics on the path to predictive medicine]. Acta Naturae, 2009, vol. 1, no. 3, pp. 77–88. (In Russian)

Aronowitz R. A. The converged experience of risk and disease. The Milbank Quarterly, 2009, vol. 87, no. 2, p. 417–442.

Armstrong D. The rise of surveillance medicine. Sociology of health & illness, 1995, vol. 17, no. 3, pp. 393–404.

Aronowitz R. A. Unnatural history: Breast cancer and American society. New York, Cambridge University Press, 2007. 366 p.

Dean M. et al. “When information is not enough”: A model for understanding BRCA-positive previvors’ information needs regarding hereditary breast and ovarian cancer risk. Patient Education and Counseling, 2017, vol. 100, no. 9, pp. 1738–1743.

Prior L. Talking about the gene for cancer: a study of lay and professional knowledge of cancer genetics. Sociology, 2007, vol. 41, no. 6, pp. 985–1001.

Cockerham W. C. Health Lifestyle Theory and the Convergence of Agency and Structure. Journal of Health and Social Behavior, 2005, vol. 46, no. 1, pp. 51–67.

d’Agincourt-Canning L. Genetic testing for hereditary breast and ovarian cancer: Responsibility and choice. Qualitative Health Research, 2006, vol. 16, no. 1, pp. 97–118.

Hesse-Biber S. Gender differences in psychosocial and medical outcomes stemming from testing positive for the BRCA1/2 genetic mutation for breast cancer: An explanatory sequential mixed methods study. Journal of Mixed Methods Research, 2016. DOI: https://doi.org/10.1177/1558689816655257.

Eccleston A. et al. A Cost-Effectiveness Evaluation of Germline BRCA1 and BRCA2 Testing in UK Women with Ovarian Cancer. Value in Health, 2017, vol. 20, no. 4, pp. 567–576.

Hogarth S., Javitt G., Melzer D. The current landscape for direct-to-consumer genetic testing: legal, ethical, and policy issues. Annual Review of Genomics and Human Genetics, 2008, vol. 9, pp. 161–182.

Parthasarathy S. Architectures of genetic medicine: comparing genetic testing for breast cancer in the USA and the UK. Social Studies of Science, 2005, vol. 35, no. 1, pp. 5–40.

Singer E., Antonucci T., Van Hoewyk J. Racial and ethnic variations in knowledge and attitudes about genetic testing. Genetic testing, 2004, vol. 8, no. 1, pp. 31–43.

Liubchenko L. N., Bateneva E. I., Vorotnikov I. K., Portnoi S. M., Krokhina O. V., Sobolevskii V. A., Zhukova L. G., Khailenko V. A., Tiuliandin S. A. Nasledstvennyi rak molochnoi zhelezy: geneticheskaia i klinicheskaia geterogennost’, molekuliarnaia diagnostika, khirurgicheskaia profilaktika v gruppakh riska [Hereditary breast cancer: genetic and clinical heterogeneity, molecular diagnostics, surgical prevention in risk groups]. Uspekhi molekuliarnoi onkologii, 2014, no. 2, pp. 16–25. (In Russian)

Kenen R., Ardern-Jones A., Eeles R. Living with chronic risk: healthy women with a family history of breast/ovarian cancer. Health, Risk & Society, 2003, vol. 5, no. 3, pp. 315–331.

Hesse-Biber S. Waiting for cancer to come: Women’s experiences with genetic testing and medical decision making for breast and ovarian cancer. Michigan, University of Michigan Press, 2014. 226 p.

Casper M. J., Morrison D. R. Medical sociology and technology: Critical engagements. Journal of Health and Social Behavior, 2010, vol. 51, no. 1, pp. 120–132.

Akrich M., Pasveer B. Multiplying obstetrics: techniques of surveillance and forms of coordination. Theoretical medicine and bioethics, 2000, vol. 21, no. 1, pp. 63–83.

Hallowell N. Doing the right thing: genetic risk and responsibility. Sociology of Health & Illness, 1999, vol. 21, no. 5, pp. 597–621.