Genetic risk online and offline: Two ways of being susceptible to blood clots

Abstract

Social science research into online health groups often studies characteristics of Internet communication, such as anonymity and ability to connect individuals across distance, which facilitate unique modes of support between people with similar illnesses. This article compares discussion in an online group for people with a genetic susceptibility for deep vein thrombosis with offline interviews with individuals with the same condition. Active participants in the online group were mostly acutely or chronically ill, and the intense discussion revolved around the use of anticoagulant medications with potentially serious side-effects. Most of the individuals interviewed offline were healthy and described themselves as 'blase´' about the condition, even if they were sometimes poorly informed. The findings indicate that online groups do indeed support their members but the support may focus on specific practices, such as the use of drugs. Drawing on multi-sited ethnography this article suggests studying online groups in relation to other possible ways of relating to health. Discerning what kinds of health identities and practices online groups cultivate is particularly important when investigating new 'at risk' conditions, which open up a broad range of possible identities and preventive actions.

Life ‘on high alert’: how do people with a family history of motor neurone disease make sense of genetic risk? insights from an online forum

“…Forum users may have unmet support or informational needs or be more engaged in learning about and discussing the condition. As has been highlighted in existing literature (Saukko, 2009), we reinforce the need for further research into the characteristics of those who do and do not participate in such groups. We must also keep in mind that we do not know how responses to forum threads were received by the original poster.…”

“…Crucial here is the sharing of experiential knowledge, through the exchange of rich, embodied and situated accounts grounded in personal experiences (Kingod et al, 2017). In the forum space, personal experiences interact with other sources of information to construct 'authoritative knowledge' (Kazmer et al, 2014), fostering a collective intelligence (Kenen et al, 2007), or 'groupthink' (Saukko, 2009).…”

A systematic review regarding women’s emotional and psychological experiences of high-risk pregnancies

“…Depression disorder This demonstrates that depression is most associated to mothers' actual experience of motherhood. Yeakey et al [38], Saukko [23], and Kaye et al [28] report that participants in different studies conducted in Malawi, England, and Uganda who had a high-risk pregnancy condition (i.e. obstetric fistula, uterine rupture or thrombophilia) suffered from major depressive disorder.…”

Public engagement and the role of the media in post-marketing drug safety: the case of Eltroxin® (levothyroxine) in New Zealand

“…Medawar and colleagues argue that Internet sites, which act as patient support groups, allowing patients to tell their medication stories, can act in this way (Medawar et al, 2002). Saukko (Saukko, 2009) provides an example of this in relation to a thrombophilia online group, where participants could consider whether or not their symptoms were related to anticoagulant medication when others made these claims. By reading the stories of others, patients can consider the validity of their own stories.…”