Informed consent is an extremely significant part of qualitative research for sociologists. Qualitative research involves human participants, and is all about analysing these people and their experiences. Informed consent means that the participant fully understands what the study is about, what will happen during and after the study, as well as the risk and benefits of participating in the study. Informed consent is significant for all qualitative research studies, however it is particularly important for those involving different social and cultural groups. Having informed consent makes a huge difference in the process and the outcomes of qualitative, human studies.
Informed consent is particularly important in qualitative research studies, as these types of studies are focused on people and their experiences. Orb, Eisenhauer, and Wynaden argue that in all types of research, ethical problems can appear (2001, 93). They believe that in any type of research that involves people, the researcher needs to be aware of any possible ethical issues that may arise (2001, 93). One of these ethical problems within qualitative research is the way in which the researcher finds and connects with a particular group and the effects of the researcher’s presence within that group (Orb, et al. 2001, 93). The relationship between the researcher and the participant is extremely significant in qualitative research, more so than in quantitative research. The purpose of qualitative research is to study something based on the participants experiences. This type of research is mainly done through interviews and/or observations. Problems within qualitative research often arise from the relationship between the researcher and the participant. It is important that the researcher creates a ‘balanced’ relationship as this means that the participant will be able to trust them, and they will also be more aware of any issues that may appear during the study (Orb, et al. 2001, 94). Orb, Eisenhauer, and Wynaden say that the researcher has a responsibility to think about both the benefits of a study as well as any potential harm, and use this to guide their research (what they should or shouldn’t do) (2001, 94). Michelle Byrne argues that in a qualitative research study the benefits to participants should be more/greater than the risks involved or the level of harm to participants (2001, 402). She argues that it is important during qualitative research studies that subjects are informed about “the purpose and procedures, as well as the risks and benefits, before study initiation” (2001, 401).
By using the term ‘informed consent’ it usually means consent that has already been given or completed (past tense). This means that all of the information the participant needs to know is discussed or known before the study takes place. In quantitative research studies, having the participant sign a physical informed consent form is more common or expected. As quantitative studies are often surveys or data collection (that only need to be completed once) it is easier to get informed consent for this type of research (Byrne, 2001, 402). In comparison, qualitative research studies are often longer and more complicated and detailed. This means it is more difficult to get informed consent for this as things often change during the course of a qualitative study. Information or questions that come about during the study may not be known or possible to predict, and so the researcher is unable to get informed consent for this before the study begins. Because of this, informed consent cannot be a one time occurrence during qualitative studies and needs to be ongoing and re-evaluated as the study progresses (Byrne, 2001, 402).
Informed consent is all about the relationship between the researcher and the research participant, that focuses on and respects the participant’s ‘self-determination’ and autonomy (Miller; Boulton, 2007, 2199). It is used to protect the person from exploitation or harm during and after the study (2202). An important aspect of informed consent is about insuring a person’s privacy, fair treatment, as well as protecting the participant from ‘discomfort or harm’ (Byrne, 2001, 401). In order for a study participant to properly be able to give informed consent they need to know about the purpose of the study, what is going to happen during the study, and the risks and benefits they might experience, as well as assurance of confidentiality and the option to drop out of the study if they need or want to (Byrne, 2001, 402). Informed consent is important in research that involves human participants. These people’s rights need to be protected. These rights include the right to “be informed about the study, the right to freely decide whether to participate in a study and the right to withdraw at any time without penalty” (Orb, et al. 2001, 95). Patricia Munhall argues that the process of informed consent should be ongoing because qualitative research is “an ever-changing field,” (1988, 156). She says that consent needs to be regularly discussed as unpredictable events might occur during the research process. This is so that the participant is constantly aware of what they are agreeing to and what the consequences of that might be (156). The researcher needs to constantly evaluate the conditions they are working in and regularly get new consent or permission (Munhall, 1988, 157). The researcher needs to ask the participant for consent first, before any changes are made to the focus or direction of the study (157). Miller and Bell say that the idea of informed consent can be problematic, “if it is not clear what the participant is consenting to,” (2011, 54). They also say that often the line between where participation in a study begins and ends is blurred. Consent should be renegotiated between the researcher and the participant throughout the study, so that the participant is always aware of what they are agreeing to (Miller; Bell, 2011, 54).
It is important for the researcher to express the research aims before the study begins, however these might change as the study progresses, which is why ongoing consent is necessary (Miller; Bell, 2011, 55). What the participant is actually consenting or agreeing to might only become obvious or known during or at the end of a study (55). It is also important for researchers to make sure that the participant is in a position/is able to fully choose to give consent or not (Miller; Bell, 2011, 55). Often qualitative research studies involve a ‘gatekeeper’. This is someone who ‘gives’ the researcher access to possible participants (Miller; Bell, 2011, 55). The idea of a gatekeeper is sometimes an issue in qualitative studies as it suggests that the gatekeeper has more power over the participants, and that sometimes a person might feel pressured into participating in a study because of this power dynamic (55). Within informed consent it is important to ensure that the consent being given is up to the individual, and that the participant has made the choice to give consent. This means that the researcher needs to make sure that no coercion has occurred, however this is difficult to analyse when issues of gender or ethnicity are at play (Miller; Bell, 2011, 56). “The question of who is actually giving consent and to what must be considered throughout,” (Miller; Bell, 2011, 62).
Two famous qualitative studies that did not have proper informed consent include the Tuskegee study of syphilis in African American men, and Nazi Experiments during World War II (Byrne, 2001, 401). The Tuskegee study first started in 1932 and it wasn’t until 1972 that it was eventually stopped. The purpose of this study was to analyse the effects that syphilis had on African American adult males. These men were not informed of this purpose, nor were they informed of the risks of this study. There was a very high rate of deaths within this study, however the men were still not treated, even though the cure for syphilis was known at the time (401). Both classism and racism were major ethical issues within this study, as these men were poor, black and had no knowledge of syphilis or medical treatment (so they didn’t know any better). This is an example of not getting informed consent within a qualitative study with human participants, and exploiting a particular social and cultural group as justification for ‘research’.
Informed consent is significant within qualitative studies that involve diverse social and cultural or minority groups. Giving consent to participate in a qualitative study or not is a choice. Making this kind of decision can often be a difficult process, depending on the length or type of study. Agnew and Jorgenson say that in New Zealand, many Māori and Pasifika people prefer to include family in their decision making, as well as possibly consulting elders in their community as well (2012, 763). This means that giving informed consent is a much more complex and communal task for people within these different cultural groups. Quinn, Garza, Butler, Fryer, Casper, Thomas, Barnard and Kim argue that the process of gaining informed consent needs to be changed, in order to increase and ‘improve recruitment’ or minority groups into research studies (2012, 44). They say that the best way to make this change happen is to start including methods that are supported or suggested by these different social and cultural groups (44). These authors argue that by doing this, it will help to increase the the number of minority participants in studies as well as improve their understanding of these types of qualitative studies. This will mean that the overall trust and acceptance of or interest in further studies will become greater (2012, 44). Quinn et al. say that research participants are often misinformed about the study they are consenting to be a part of. They argue that this is most commonly the case for racial and ethnic minority groups (2012, 44). They say that within these groups, as well as other minority social and cultural groups, there is a lack of trust and an expectation that they will be treated unfairly or that they will be not well informed. This lack of trust is based on a history of misinformation or mistreatment in previous or historical studies (Quinn et al. 2012, 44). Quinn et al. emphasise the significance of translated or interpreted informed consent processes for some minority cultural groups (2012, 45). This shows how dynamic and detailed informed consent often needs to be, to ensure that the participant has a complete understanding of what they are consenting to, no matter what particular social or cultural group they belong to.
Getting informed consent is an important aspect of qualitative research, human participant, studies, especially those involving diverse social and cultural groups. Qualitative research is all about studying people, which is why a good relationship, based on trust, between the researcher and the participant is so important. When giving informed consent, the participant should be fully aware of the purpose of the study, what is going to happen, and the risks, consequences and benefits of taking part in the particular study. Informed consent is about respecting a person’s autonomy, choice, privacy and ensuring fair treatment and protection from harm or exploitation. Informed consent is incredibly significant when working with human participants and is about protecting their rights. Gaining informed consent should be an ongoing process, not a one-time occurance at the beginning of the study. This is so that the participant is always aware of and clear on what they are consenting to. Informed consent is particularly important in relation to studies on minorities or diverse groups. This is because decision making is a much bigger deal in some cultural groups, as well as about changing the lack of trust felt by minority groups within research studies. As well as to help these diverse social and cultural groups get a better understanding of what they are consenting to. Informed consent within qualitative studies is significant because it helps us to understand both social and cultural inequalities in our society, based on how some people are treated or the ways they expect to be treated in terms of research studies. It also matters as it is overall about respecting people and protecting their rights as people.