Improving Consent and Response in Longitudinal Studies of Aging Proceedings of a Workshop (2022) / Chapter Skim
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4 Informed Consent
4 Informed Consent
Pages 49-70
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From page 49... ...
Jäckle explained this study, Understanding Society, is a longitudinal household panel and the UK equivalent to the Panel Study of Income Dynamics. Data are collected using a combination of web, face-to-face, and telephone interviewing, and they request respondents' consent to link data to different government administrative records and financial data.
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From page 50... ...
She explained the findings from these qualitative interviews were used to develop a conceptual framework about how people make the consent decision, generate hypotheses, and then experimentally test some of the hypotheses using both the Innovation Panel and an additional online access panel to increase their sample size. As Jäckle discussed, their conceptual framework for consent draws upon the cognitive model of the survey response process, which states that in order to answer a survey question, respondents have to understand the question, retrieve relevant information from memory, form a judgment, and then decide what they are actually going to say; however, respondents do not necessarily execute this process optimally.
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From page 51... ...
The study assumes a continuum of decision processes, with some respondents making the decision in a more reflective way and others in a less reflective way. She noted that respondents are not directly observed in this decision process, but are asked to selfreport how they made the decision.
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From page 52... ...
Jäckle said that the self-reported decision process measures real differences between respondents and that the decision process that people use is related to the outcomes, with more reflective decision makers having higher consent rates and better understanding of the consent request; however, that is not neces sarily a causal effect. In terms of why respondents are less likely to consent in web than face to-face encounters, Jäckle said the 30-percentage-point difference in consent rates between modes is causal: Respondents are less likely to consent when they answer online than face-to-face, and they also understand the request less well.
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From page 53... ...
Just providing more information is unlikely to increase informed consent, she said, but the researchers do not know how they can get more people to make a reflective decision and whether it is possible to shift people's decision-making style and thereby increase informed consent. Biomeasures: Gaining Cooperation and Informed Consent Katie O'Doherty is senior research director in the Health Sciences Department at NORC at the University of Chicago.
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From page 54... ...
Many of the measures have very high cooperation rates, but rates are a little lower for saliva and blood spots, and are the lowest for vaginal swabs and accelerometry, which involves wearing a device for 8 days. O'Doherty next described self-administered biomeasure collection.
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From page 55... ...
People who are interested then receive much more detailed additional consent language, which includes the risks and benefits and how their data will be protected. If they consent to receive the BioBox, it is mailed to them along with a copy of their consent form and a prepaid incentive.
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From page 56... ...
In conclusion, O'Doherty touched on refusal conversion for both the NSHAP BioBox and HS&B health visit. Because gaining cooperation and informed consent are attempted without an in-person interviewer to explain things in more detail, experienced interviewers call respondents to revisit the biomeasure collection consent and answer questions about a month after a remote interview.
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From page 57... ...
Grady discussed several implications of understanding and consent for longitudinal studies. Some evidence suggests that people forget information that was provided to them at an earlier point in time, she said.
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From page 58... ...
She concluded by calling for a better understanding about why people want or do not want to participate in longitudinal studies, how to make them as convenient and low burden as possible, how to earn trust, and how incentives play a role. ETHICAL CONSIDERATIONS FOR OBTAINING INFORMED CONSENT Vetta Sanders Thompson commented that Grady's presentation provides a good transition to a discussion of ethical issues encountered in longitudinal study consent, particularly variability over time and what participants are asked to consent to.
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From page 59... ...
She took a theoretical approach to question assumptions and frameworks in order to better achieve the goals of longitudinal research, especially with aging populations. She related that her work in the ethics of biobanking, biobanking consent, biobanking in communities, as well as challenges to traditional informed consent paradigms, apply to longitudinal studies in aging populations.
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From page 60... ...
She challenged workshop participants to think about what it means to be in an ethical relationship with people in longitudinal studies, and what it means for information and choice. Cargill said that for people to continue to participate ethically in longitudinal studies, they need to continue to make the choice to be in it.
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From page 61... ...
Her research focuses on Alzheimer's disease, and she said she has been keenly aware of the ethical challenges that arise when participants have or -- as can occur in longitudinal studies of aging -- may be expected to experience cognitive or functional impairment. Because it is important to include cognitively impaired older adults in studies, she said it is necessary to identify strategies to approach the consent process thoughtfully.
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From page 62... ...
Largent suggested that researchers conducting longitudinal studies of aging may wish to consider alternative mechanisms, such as research ad vance directives, for participants to express their research-related wishes should they become incapacitated. Research advance directives are not widely used, she acknowledged, but they can be useful in sparking discus sion among family members who may not otherwise have an opportunity to discuss an individual's preferences regarding research participation.
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From page 63... ...
Unsurprisingly, cognitively unimpaired older adults tend to make these decisions more independently, but they still talk about engaging with trusted others to discuss research participation. Largent noted that dyads in which the research participant has either mild cognitive impairment or a dementia-level impairment may still engage in a highly collaborative process between the participant and the study partner, although the study partner takes on a more dominant role in decision making as the participant's cognitive decline continues.
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From page 64... ...
She empha sized making sure the consent process helps people understand what the results are and if results will be coming to them, and that information needs to be provided in the informed consent document. Largent concluded that longitudinal studies of aging constitute an im portant means of understanding and addressing the needs of older adults and their family members; however, obtaining consent in such studies, particularly when individuals are at risk for or experiencing impaired deci sional capacity, can be ethically challenging.
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From page 65... ...
While it is necessary that the consent process provide disclosures of relevant information, Sah said her focus is on whether some disclosures have an impact on the other elements that are needed for valid consent, in particular the voluntary element. Her research has examined disclosures of potential risk, which can produce unintended burdens due to unexpected psychological effects that can occur.
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From page 66... ...
In this option, the doctor says, "I do think it is important, however, to let you know I will receive a referral fee from the manufacturer of the drug if I refer you for the clinical trial." Sah said that in the disclosure condition she saw a significantly decreased amount of trust in the doctor, but at the same time, reports of increased insinuation anxiety. She noted that both trust and insinuation anxiety matter when making a decision about whether or not to follow the advice.
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From page 67... ...
Giving the disclosure ahead of time, making sure it is salient, and making sure people understand that they can deliberate would help reduce insinuation anxiety, she said. Discussion Thompson asked John Phillips to launch the discussion.
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From page 68... ...
Phillips asked whether giving people time to leave and think about participating means that they might not come back. Sah replied that it will increase valid consent.
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From page 69... ...
Cargill identified two kinds of longitudinal studies: in some cases, people provide samples and data, and the researcher wants to be allowed to continue to use it. This case provides an incentive to stay under the radar, because as long as they are not reminded, they are not going to withdraw.
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