- Email: [email protected]
Opportunities and challenges of online data collection for suicide prevention
Correspondence
In her World Report (Feb 4, p 397),1 Amy Yee describes how alleged ethical violations have raised controversy over clinical trials in India and that regulations have been “failing to keep up with India’s trials boom”. The facts speak for themselves: nearly 1600 people reportedly died in India during “clinical trials of drugs conducted by various multinational pharmaceutical companies” in 2008–10.2 Cases of ethical violations are not new; victims of the 1984 Bhopal gas tragedy were also enrolled—without their knowledge or consent to participation—in clinical trials sponsored by pharmaceutical companies.3 Further, as revealed in 2008, 49 babies died during clinical trials for new drugs at India’s premier medical institution over a period of 2·5 years.4 Several published reports, taken together, thus confirm that clinical trials are taking a toll on human life in India and raise some disturbing ethical questions.2–5 Part of the ethical crisis that the clinical trials industry poses to the Indian setting stems from the fact that India lacks effective regulatory mechanisms for oversight of clinical trials. The crisis is worsened by the allpervasive reality of corruption in India’s social institutions, including health care. Questions thus arise about the real efficacy of ethics guidelines and certification of good clinical practice in morally compromised health-care institutions. It is time to acknowledge an ethical crisis in the clinical trials industry in India and to start thinking of creative solutions to tackle this menace.
2
Anon. Clinical trials claimed almost 1,600 lives in 3 yrs: Directorate General of Health Services. Economic Times Sep 25, 2011 http://articles. economictimes.indiatimes.com/2011-09-25/ news/30200852_1_clinical-trials-rtiapplication-rti-query (accessed Feb 13, 2012). Varma S. Bhopal gas victims now turn guinea pigs. Times of India Feb 24, 2011. http:// articles.timesofindia.indiatimes.com/2011-0224/india/28627612_1_gas-victims-bhopalmemorial-hospital-gas-disaster (accessed Feb 13, 2012). Sinha K. 49 babies die during clinical trials at AIIMS. Times of India Aug 18, 2008. http:// articles.timesofindia.indiatimes.com/200808-18/india/27947426_1_clinical-trials-aiimsadministration-foreign-drugs (accessed Feb 13, 2012). Sengupta A. Fatal trials: clinical trials are killing people. Indian J Med Ethics 2009; 6: 118–19.
3
4
5
Opportunities and challenges of online data collection for suicide prevention On March 1, 2012, Google implemented their new privacy policy of collecting users’ usage information for all Google services. This information could help Google tailor users’ search results and target users with advertising. Meanwhile, in China, a 2·5
new regulation, which took effect on March 16, requires that all providers of Weibo (a social networking site) must verify their users’ real names and contact information. In 2010, a Chinese court ruled that internet service providers (ISPs) could be held accountable if they did not report suicide messages or prosuicide information to appropriate authorities.1 We would like to discuss the possible implications of online data collection for suicide prevention. The ISPs’ data collection could help identify individuals at risk of suicide and link them to suicide prevention services or organisations. For example, when people search suicide-related information or post suicide messages on relevant sites, Google’s new policy could help detect such activities and link suicidal people to help-providing organisations.2 In China, owing to a lack of suicide prevention services or helplines, ISPs could only refer possible suicidal individuals to the police. The police could help in rescuing individuals in imminent danger, but their involvement might discourage online users from disclosing suicidal
Global internet users* Internet users in China† Facebook monthly active users‡ Sina Weibo registered users§
2·0
Number of users (billions)
Guinea pigs in human form: clinical trials in unethical settings
1·5
1·0
0·5
I declare that I have no conflicts of interest.
Subrata Chattopadhyay [email protected] Sikkim Manipal Institute of Medical Sciences, Tadong, Gangtok, Sikkim 737102, India 1
Yee A. Regulation failing to keep up with India’s trials boom. Lancet 2012; 379: 397–98.
www.thelancet.com Vol 379 May 26, 2012
0 2004
2005
2006
2007
2008
2009
2010
2011
Year
Figure: Increasing users of online social networking sites Facebook was founded in June, 2004, and is often blocked in China. Sina Weibo was founded in August, 2009. Data sources: *http://www.internetworldstats.com; †China Internet Network Information Center; ‡Facebook Statistics, Facebook IPO registration statement; §Sina Corporation Financial Reports.
Submissions should be made via our electronic submission system at http://ees.elsevier.com/ thelancet/
e53
Correspondence
feelings and thereby deter them from the opportunity of receiving the group support offered in some online social networks.3 The data collection might also provide an opportunity to intervene when online suicide discussions are identified, although optimum intervention approaches are yet to be developed. Facebook can delete prosuicide groups reported by users.4 However, such a policy might lead some suicidal users to form closed groups, which would hinder early detection and intervention. In one recent case, Sina Weibo, a Chinese ISP, in response to suicide messages posted on its site, edited feature pages to promote mental health awareness and sent private messages to some users suggesting that they delete their pro-suicide comments. However, the feature page content was mainly taken from information available online in Chinese, which was often of poor quality.5 More and more people are using emergent online media (figure), so it is a crucial time for suicide prevention professionals and researchers to consider what role ISPs might have in suicide prevention and to develop evidence-based and culture-sensitive strategies to better support and protect online users at risk of suicide. Certainly, we need to balance personal privacy and safety, and study the feelings and reactions of users who have been monitored.
3
4
5
Collings S, Niederkrotenthaler T. Suicide prevention and emergent media: surfing the opportunity. Crisis 2012; 33: 1–4. Luxton DD, June JD, Fairall JM. Social media and suicide: a public health perspective. Am J Public Health 2012; 102 (suppl 2): S195–200. Cheng Q, Fu KW, Yip PS. A comparative study of online suicide-related information in Chinese and English. J Clin Psychiatry 2011; 72: 313–19.
We declare that we have no conflicts of interest.
Qijin Cheng, Shu-Sen Chang, *Paul S F Yip [email protected] Department of Social Work and Social Administration, University of Hong Kong, Hong Kong SAR, China (QC, PSFY); HKJC Centre for Suicide Research and Prevention, University of Hong Kong, Hong Kong SAR, China (S-SC, PSFY); and School of Social and Community Medicine, University of Bristol, Bristol, UK (S-SC) 1
2
e54
Cheng Q. Are Internet service providers responsible for online suicide pacts? BMJ 2012; 344: d2113. Boyce N. Pilots of the future: suicide prevention and the internet. Lancet 2010; 376: 1889–90.
www.thelancet.com Vol 379 May 26, 2012
In her World Report (Feb 4, p 397),1 Amy Yee describes how alleged ethical violations have raised controversy over clinical trials in India and that regulations have been “failing to keep up with India’s trials boom”. The facts speak for themselves: nearly 1600 people reportedly died in India during “clinical trials of drugs conducted by various multinational pharmaceutical companies” in 2008–10.2 Cases of ethical violations are not new; victims of the 1984 Bhopal gas tragedy were also enrolled—without their knowledge or consent to participation—in clinical trials sponsored by pharmaceutical companies.3 Further, as revealed in 2008, 49 babies died during clinical trials for new drugs at India’s premier medical institution over a period of 2·5 years.4 Several published reports, taken together, thus confirm that clinical trials are taking a toll on human life in India and raise some disturbing ethical questions.2–5 Part of the ethical crisis that the clinical trials industry poses to the Indian setting stems from the fact that India lacks effective regulatory mechanisms for oversight of clinical trials. The crisis is worsened by the allpervasive reality of corruption in India’s social institutions, including health care. Questions thus arise about the real efficacy of ethics guidelines and certification of good clinical practice in morally compromised health-care institutions. It is time to acknowledge an ethical crisis in the clinical trials industry in India and to start thinking of creative solutions to tackle this menace.
2
Anon. Clinical trials claimed almost 1,600 lives in 3 yrs: Directorate General of Health Services. Economic Times Sep 25, 2011 http://articles. economictimes.indiatimes.com/2011-09-25/ news/30200852_1_clinical-trials-rtiapplication-rti-query (accessed Feb 13, 2012). Varma S. Bhopal gas victims now turn guinea pigs. Times of India Feb 24, 2011. http:// articles.timesofindia.indiatimes.com/2011-0224/india/28627612_1_gas-victims-bhopalmemorial-hospital-gas-disaster (accessed Feb 13, 2012). Sinha K. 49 babies die during clinical trials at AIIMS. Times of India Aug 18, 2008. http:// articles.timesofindia.indiatimes.com/200808-18/india/27947426_1_clinical-trials-aiimsadministration-foreign-drugs (accessed Feb 13, 2012). Sengupta A. Fatal trials: clinical trials are killing people. Indian J Med Ethics 2009; 6: 118–19.
3
4
5
Opportunities and challenges of online data collection for suicide prevention On March 1, 2012, Google implemented their new privacy policy of collecting users’ usage information for all Google services. This information could help Google tailor users’ search results and target users with advertising. Meanwhile, in China, a 2·5
new regulation, which took effect on March 16, requires that all providers of Weibo (a social networking site) must verify their users’ real names and contact information. In 2010, a Chinese court ruled that internet service providers (ISPs) could be held accountable if they did not report suicide messages or prosuicide information to appropriate authorities.1 We would like to discuss the possible implications of online data collection for suicide prevention. The ISPs’ data collection could help identify individuals at risk of suicide and link them to suicide prevention services or organisations. For example, when people search suicide-related information or post suicide messages on relevant sites, Google’s new policy could help detect such activities and link suicidal people to help-providing organisations.2 In China, owing to a lack of suicide prevention services or helplines, ISPs could only refer possible suicidal individuals to the police. The police could help in rescuing individuals in imminent danger, but their involvement might discourage online users from disclosing suicidal
Global internet users* Internet users in China† Facebook monthly active users‡ Sina Weibo registered users§
2·0
Number of users (billions)
Guinea pigs in human form: clinical trials in unethical settings
1·5
1·0
0·5
I declare that I have no conflicts of interest.
Subrata Chattopadhyay [email protected] Sikkim Manipal Institute of Medical Sciences, Tadong, Gangtok, Sikkim 737102, India 1
Yee A. Regulation failing to keep up with India’s trials boom. Lancet 2012; 379: 397–98.
www.thelancet.com Vol 379 May 26, 2012
0 2004
2005
2006
2007
2008
2009
2010
2011
Year
Figure: Increasing users of online social networking sites Facebook was founded in June, 2004, and is often blocked in China. Sina Weibo was founded in August, 2009. Data sources: *http://www.internetworldstats.com; †China Internet Network Information Center; ‡Facebook Statistics, Facebook IPO registration statement; §Sina Corporation Financial Reports.
Submissions should be made via our electronic submission system at http://ees.elsevier.com/ thelancet/
e53
Correspondence
feelings and thereby deter them from the opportunity of receiving the group support offered in some online social networks.3 The data collection might also provide an opportunity to intervene when online suicide discussions are identified, although optimum intervention approaches are yet to be developed. Facebook can delete prosuicide groups reported by users.4 However, such a policy might lead some suicidal users to form closed groups, which would hinder early detection and intervention. In one recent case, Sina Weibo, a Chinese ISP, in response to suicide messages posted on its site, edited feature pages to promote mental health awareness and sent private messages to some users suggesting that they delete their pro-suicide comments. However, the feature page content was mainly taken from information available online in Chinese, which was often of poor quality.5 More and more people are using emergent online media (figure), so it is a crucial time for suicide prevention professionals and researchers to consider what role ISPs might have in suicide prevention and to develop evidence-based and culture-sensitive strategies to better support and protect online users at risk of suicide. Certainly, we need to balance personal privacy and safety, and study the feelings and reactions of users who have been monitored.
3
4
5
Collings S, Niederkrotenthaler T. Suicide prevention and emergent media: surfing the opportunity. Crisis 2012; 33: 1–4. Luxton DD, June JD, Fairall JM. Social media and suicide: a public health perspective. Am J Public Health 2012; 102 (suppl 2): S195–200. Cheng Q, Fu KW, Yip PS. A comparative study of online suicide-related information in Chinese and English. J Clin Psychiatry 2011; 72: 313–19.
We declare that we have no conflicts of interest.
Qijin Cheng, Shu-Sen Chang, *Paul S F Yip [email protected] Department of Social Work and Social Administration, University of Hong Kong, Hong Kong SAR, China (QC, PSFY); HKJC Centre for Suicide Research and Prevention, University of Hong Kong, Hong Kong SAR, China (S-SC, PSFY); and School of Social and Community Medicine, University of Bristol, Bristol, UK (S-SC) 1
2
e54
Cheng Q. Are Internet service providers responsible for online suicide pacts? BMJ 2012; 344: d2113. Boyce N. Pilots of the future: suicide prevention and the internet. Lancet 2010; 376: 1889–90.
www.thelancet.com Vol 379 May 26, 2012