Attitudes of the Japanese public and doctors towards use of archived information and samples without informed consent: Preliminary findings based on focus group interviews

Asai, Atsushi; Ohnishi, Motoki; Nishigaki, Etsuyo; Sekimoto, Miho; Fukuhara, Shunichi; Fukui, Tsuguya

doi:10.1186/1472-6939-3-1

Cited by 37 publications

(64 citation statements)

References 10 publications

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“…i.e, limiting to oneself and not disclosing to others. [10][11][12][13][14] These findings were in agreement with the study done by Kaufman DJ 2009 and Hansson MG in 2011 15,16 which stated that the fundamental concern about privacy is usually also the main concern of the participants when they are deciding whether to donate their samples to Biobanks. Their study showed that up to 90% of people were concerned about their privacy Thus, concluded that consequences of breaking privacy could substantially affect public's willingness to participate and substantially delay the research.…”

Section: Discussionsupporting

confidence: 86%

The awareness and perception about the Ethical concerns related to the Biobanks among Medical and Dental practitioners- A questionnaire based study

Khan

Vaswani

et al. 2017

AABS

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Background:The term "Biobank" has been used in different ways but one way is to define it as "an organized collection of human biological material and associated information stored for one or more research purposes". By definition, "Biobank" is a long-term storage and conservation facility for biological specimens, to support future scientific investigation. The aim of this study is to assess the awareness and perception of Biobanks, their existence, aims and objectives and the ethical concerns related to them, among the clinicians pertaining to both medical and dental specialties.Methods: A questionnaire comprising of 31 questions of which few are purely awareness and rest are perception based is framed. The questions which were framed for the questionnaire, have few of them given direct responses as YES, NO, DON'T KNOW and the remaining of them have been graded into LIKERT'S SCALE, ranging from 1 to 5. Statistical analysis: After obtaining the response, the answers were plotted in MS-Excel sheet and analysed statistically for the Percentages, Frequencies, Chi-square and degree of Association (p>0.05= No Association) between the two fraternities responses by using SPSS 22.0 version software. The p value was set at 0.05Result: There was found a level of association between both the groups for certain sensitive questions relating to privacy of information and ownership claims. Conclusion:It can be concluded that the willingness to participate in sample donation, motivation for sample donation are in agreement with each other, which is worth being further investigated.

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Section: Discussionsupporting

confidence: 86%

The awareness and perception about the Ethical concerns related to the Biobanks among Medical and Dental practitioners- A questionnaire based study

Khan

Vaswani

et al. 2017

AABS

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“…The concerns our respondents had were ''the confidentiality of personal information is protected'', ''how the research result is utilized and published'' and ''the possible revealing of an association between my DNA and ADRs''. The main concern in our study that ''the confidentiality of personal information is protected'' was also reported in previous studies in other countries and in Japan (Pulley et al 2008;Wong et al 2004;Hoeyer et al 2004;Asai et al 2002). Also, this was the main reason for the unwillingness to donate DNA samples in our study, ''I don't want my personal information to be utilized in research''.…”

Section: Discussionmentioning

confidence: 50%

Public involvement in pharmacogenomics research: a national survey on public attitudes towards pharmacogenomics research and the willingness to donate DNA samples to a DNA bank in Japan

Kobayashi

Satoh

2009

Cell Tissue Bank

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To assess the attitudes of the Japanese general public towards pharmacogenomics research and a DNA bank for identifying genomic markers associated with ADRs and their willingness to donate DNA samples, we conducted a national survey for 1,103 Japanese adults from the general public, not a patient population. The response rate was 36.8%. The majority of the respondents showed a positive attitude towards pharmacogenomics research (81.0%) and a DNA bank (70.4%). Considering fictitious clinical situations such as taking medications and experiencing ADRs, the willingness to donate DNA samples when experiencing ADRs (61.7%) was higher than when taking medications (45.3%). Older generations were significantly associated with a decreased willingness to donate (OR = 0.45, CI 0.28-0.72 in 50s. OR = 0.49, CI: 0.31-0.77 in 60s). Positive attitudes towards pharmacogenomics research, a DNA bank, blood/bone marrow/organ donation were significantly associated with an increased willingness. However, the respondents had the following concerns regarding a DNA bank: the confidentiality of their personal information, the manner by which research results were utilized and simply the use of their own DNA for research. In order to attain public understanding to overcome these concerns, a process of public awareness should be put into place to emphasize the beneficial aspects of identifying genomic markers associated with ADRs and to address these concerns raised in our study. Further study is needed to assess the willingness of actual patients taking medications in real situations, since the respondents in our study were from the general public, not a patient population, and their willingness was assessed on the condition of assuming that they were patients taking medications.

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“…[17][18][19][20] In fact, numerous studies have found a positive correlation between level of trust and degree of participation not only in biobanking, but in research as a whole. 5,6,8,9,[21][22][23][24][25] Although further work would be needed to explicitly measure trust in research enterprises and researchers, our results may be indicative of trust of respondents in the scientific community in Jordan. Public engagement, dialogues, and communication have been suggested as means of establishing public trust among participants.…”

Section: Discussionmentioning

confidence: 88%

“…For example, in a Japanese study, while respondents were supportive of research, there was concern about the use of samples without consent. 8 Additionally, participants of an Egyptian, interview-based study expressed high value of having an informed consent. 9 There has been much debate with regards to what type of informed consent is needed for an effective biobank.…”

Section: Discussionmentioning

confidence: 99%

Public support and consent preference for biomedical research and biobanking in Jordan

2012

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The success of any biobank depends on a number of factors including public's view of research and the extent to which it is willing to participate in research. As a prototype of surrounding countries, public interest in research and biobanking in addition to the influence and type of informed consent for biobanking were investigated in Jordan. Data were collected as part of a national survey of 3196 individuals representing the Jordanian population. The majority of respondents (88.6%) had a positive perception of the level of research in Jordan and they overwhelmingly (98.2%) agreed to the concept of investing as a country in research. When respondents were asked if the presence of an informed consent would influence their decision to participate in biobanking, more individuals (19.8%) considered having an informed consent mechanism as a positive factor than those who considered it to have negative connotations (13.1%). However, a substantial portion (65%) did not feel it affected their decision. The majority of survey participants (64%) expressed willingness to participate in biobanking and over 90% of them preferred an opt-in consent form whether general (75.2%) or specific for disease or treatment (16.9%). These results indicate a promising ground for research and biobanking in Jordan. Educational programs or mass awareness campaigns to promote participation in biobanking and increase awareness about informed consent and individual rights in research will benefit both the scientific community as well as the public.

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Attitudes of the Japanese public and doctors towards use of archived information and samples without informed consent: Preliminary findings based on focus group interviews

Abstract: Background: The purpose of this study is to explore laypersons' attitudes toward the use of archived (existing) materials such as medical records and biological samples and to compare them with the attitudes of physicians who are involved in medical research.

Cited by 37 publications

References 10 publications

The awareness and perception about the Ethical concerns related to the Biobanks among Medical and Dental practitioners- A questionnaire based study

The awareness and perception about the Ethical concerns related to the Biobanks among Medical and Dental practitioners- A questionnaire based study

Public involvement in pharmacogenomics research: a national survey on public attitudes towards pharmacogenomics research and the willingness to donate DNA samples to a DNA bank in Japan

Public support and consent preference for biomedical research and biobanking in Jordan

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