Human subjects applications

The next part of the chapter on grant writing is how to write an application for human subjects approval.
9.5 IRB (Human subjects) applications
Many universities and grant institutions require field research (and increasingly, field methods classes too) to be cleared by an ethics committee. IRBs are designed for monitoring human experimentation in the medical and social sciences, and as such, it can be difficult to answer the questions of their questions in a way relevant to linguistic research.
The situation is further complicated by the fact there seems to be no standard across universities, states and countries. Not all boards have linguists or anthropologists on them; some automatically grant waivers to linguistic field research, while others require full or expedited reviews. Some boards are sympathetic to the primarily collaborative nature of much fieldwork, while others treat linguistic field work the same way as medical experiments, and treat them to review by the same criteria.
Some care needs to be taken in writing human subjects applications, simply because of the likelihood that the application will be read by someone who is not familiar with the protocols of linguistic research. Therefore you may need to outline some of the differences between medical and linguistic research (talk to faculty in your department about their experiences with your institution’s IRB).
Even if you do not work in a country or at a university which requires human subjects approval, the grant organisation may require some evidence that your proposal has been reviewed.

9.5.1 Sample Questions
Ethics bodies usually want to know some combination of the following information (notes are given in the sub dot points):

  • Who is in charge of the project
    • This will usually be you, under supervision from your supervisor/advisor
  • Who is funding the project (or is funding is pending, who you have applied to)
  • the expected duration of the project
    • e.g. how much time will you spend in the field and how much time you will be working on the materials
  • non-technical summary of the project, including aims and methodology
    • you will have written something very similar to this for your grant application
    • the summary of methodological information includes whether you will be just using elicitation techniques, or a mixture of elicitation and participant observation, or other experimental techniques.
    • it is worth stressing the collaborative nature of linguistic research (if that is the way you are progressing) and the role that ‘consultants’ or ‘participants’ (and NOT ‘subjects’) have in shaping the research. This is relevant for issues of anonymity below.
  • procedures for the recruitment of subjects
    • if you already have consultants lined up, mention them here
    • if you have contacts within the community who will suggest consultants mention them here.
  • will you be recruiting “vulnerable” participants (e.g. children, the mentally ill, or others in a dependent relationship)?
  • sources of data for human subjects; (e.g. interviews, medical records)
    • will you be using published and unpublished materials as well as interviews?
  • who is required to give permission
    • usually this will be the consultants themselves;
    • you might also need to document permission from the community as well;
    • if you are working with aphasics or other people in a dependent relationship, their family, and the hospital they are in, will also need to give permission
  • what is done to the subjects
    • this is where more detailed information about your data collection techniques are given.
  • Your experience/qualifications to do this research, and those of any assistants.
    • for example, the classes you have taken (including field methods classes), any previous fieldwork, research assistant work on language data, etc.
  • What ethics documents have you read?
    • The IRB will have a set of documents that you will need to read.
    • Additional “human subjects” documents which are worth mentioning (depending on your area) include
  • MPI’s ethics statement
  • Canada’s Social Science guidelines
  • AIATSIS’s guide to research in Aboriginal and Torres Strait Islander Communities (http://www.aiatsis.gov.au/corp/docs/EthicsGuideA4.pdf)
  • NHMRC’s guide to research on Aboriginal and Torres Strait Islander people (http://www.arc.gov.au/pdf/99_05.pdf )
  • American Anthropological Association’s ethics guidelines (http://www.aaanet.org/committees/ethics/ethcode.htm)
  • How will you go about getting written informed consent?
    • As mentioned above, the most usual techniques are either a written consent form or a script to be read aloud
    • If you are working in an area where written consent is not appropriate, explain why not (for example, that your consultants are illiterate and a written record of their consent would not be meaningful; that the community/culture has a mistrust of official forms, or that the consultants will trust you and sign the form without reading it – or maybe more than one of these provisions!)
    • Mention if you will be discussing the research protocols with consultants
  • Will they suffer any harm? any benefit?
    • See Section 8.7.4 for some issues;
    • If the language is endangered and the community is in favour of the descriptive work, the potential benefits of the research are very great, and are worth stressing.
    • If the language is highly endangered, this might be the last chance for documentation, and for the community to make good use of a linguist in making a permanent record of their language. In that case, preventing the linguist from working on the language could be argued to be highly unethical.
  • Are subjects deceived in any way?
  • How will you ensure anonymity? If not, why not? Will you be using personally identifiable data?
  • What will happen to the research data at the end of the study?
  • details of payment
  • (any cultural or social considerations)
    • Not all ethics boards ask for further information, but if they do, here is a chance for you to address the ethical concerns which are specific to linguistic research (see 7.6 for various issues).

In almost all cases, student applications to IRBs need to be sponsored by a faculty member. This would be your advisor.

9.5.2 Anonymity
Many IRBs ask what provisions have been made to keep confidential the identity of participants in your research. This is a problem for many types of linguistic research, where we want to be able to identify what data came from what speaker, or in cultures where particular people “own” certain stories, and not to give them credit would be rude. It may be a particular problem if you want to video your consultants, since anonymity is difficult to protect in video recording. Furthermore, if the field site (or the number of speakers of the language) is small, your speakers may be identifiable even if their names are not published.
Ladefoged (2003:15-16) notes that in most places that he has worked, people were proud to be identified with helping to describe their language. That has also been my experience. There may be situations, however, where speakers do not want to be publicly identified (Vaux and Cooper 1997 mention a number of good cases).
This also feeds into the collaboration idea – why should language consultants not be given public acknowledgement for their work when colleagues and coresearchers within academia always would. It is therefore important to emphasise the collaborative nature of your work and the different research practices between psychology/medical sciences and linguistics.
The best way to address these questions is simple to ask your consultants if they want their name on the book or materials (e.g. “is it ok/do you want you name to appear on this language work?” “Is it ok that others know that you’re working on this project and that you told me about your language?”) Be careful not to frame these sorts of questions as leading questions. If you aren’t sure whether your consultants are just being polite, make up a few different mock-ups of title pages and ask them to choose which one their like the best.
It is impossible to guarantee absolute anonymity in all circumstances. This is particularly true in the case of endangered languages with small numbers of speakers, or remote areas where the community membership is small (and people know who you’ve talked to). So, it is important that you do not promise to guarantee anonymity absolutely.
Another issue with regard to anonymity is the publication of names of people who have passed away. In many cultures this is no problem, but in areas where it is forbidden to speak the name of a person who has died you will want to check the situation. You could talk about this in advance with your consultants if you feel comfortable about it, or if the situation arises check with a family member or someone in a position of cultural authority who can answer. In some cases it might be all right to write the name down but not say it aloud. Others may want tapes, videos or stories embargoed for a time.
If your consultants wish to remain anonymous, acknowledgement anonymously is still good to do. Respect other’s attempts at preserving the anonymity of their consultants too.

9.5.3 Informed consent
A very important issue for linguistic research is the demonstration of informed consent; that is, the speakers’ consent to you working on the language, and their acknowledgment that they understand what you are going to do, how you are going to do it, and what the results will be. “Informed consent” is meaningless if the person does not know what they are agreeing to. For example, a person agreeing to put materials on the internet has not given informed consent if they don’t have access to a computer and have never used the internet.
As we discussed in Section 8.4, informed consent is not informed if it is not obtained before the research begins. However, asking a whole lot of questions about ethics of a consultant who has never been involved with linguists before is hardly likely to produce ‘informed consent’. There are some ways to avoid these problems. One is not to discuss and some to a decision about all aspects of permission before the first recording sessions. It is important that you do not do anything without asking permission first, but that does not mean that you have to ask permission for everything at once. For example, you could postpone discussion of web distribution of materials until you have a better idea about what has been collected (but before you put anything on the web). You might want to do static palatography, but since it is an invasive procedure you probably wouldn’t want do palatography experiments before you get to know your consultants, and you might want to delay discussing the procedure until the consultants have more of an idea about what linguists do.
Consent must be “documented”. That is, there must be a record that the consultant has given consent. “Documentation” often means “documented in writing”. For example, the legislation governing research funded by the NIH in the USA states:

§46.116 General requirements for informed consent.
Except as provided elsewhere in this policy, no investigator may involve a human being as a subject in research covered by this policy unless the investigator has obtained the legally effective informed consent of the subject or the subject’s legally authorized representative. An investigator shall seek such consent only under circumstances that provide the prospective subject or the representative sufficient opportunity to consider whether or not to participate and that minimize the possibility of coercion or undue influence. The information that is given to the subject or the representative shall be in language understandable to the subject or the representative. No informed consent, whether oral or written, may include any exculpatory language through which the subject or the representative is made to waive or appear to waive any of the subject’s legal rights, or releases or appears to release the investigator, the sponsor, the institution or its agents from liability for negligence.
§46.117 Documentation of informed consent.
(a) Except as provided in paragraph (c) of this section, informed consent shall be documented by the use of a written consent form approved by the IRB and signed by the subject or the subject’s legally authorized representative. A copy shall be given to the person signing the form.
(b) Except as provided in paragraph (c) of this section, the consent form may be either of the following:
(1) A written consent document that embodies the elements of informed consent required by §46.116. This form may be read to the subject or the subject’s legally authorized representative, but in any event, the investigator shall give either the subject or the representative adequate opportunity to read it before it is signed; or
(2) A short form written consent document stating that the elements of informed consent required by §46.116 have been presented orally to the subject or the subject’s legally authorized representative. When this method is used, there shall be a witness to the oral presentation. Also, the IRB shall approve a written summary of what is to be said to the subject or the representative. Only the short form itself is to be signed by the subject or the representative. However, the witness shall sign both the short form and a copy of the summary, and the person actually obtaining consent shall sign a copy of the summary. A copy of the summary shall be given to the subject or the representative, in addition to a copy of the short form.
(c) An IRB may waive the requirement for the investigator to obtain a signed consent form for some or all subjects if it finds either:
(1) That the only record linking the subject and the research would be the consent document and the principal risk would be potential harm resulting from a breach of confidentiality. Each subject will be asked whether the subject wants documentation linking the subject with the research, and the subject’s wishes will govern; or
(2) That the research presents no more than minimal risk of harm to subjects and involves no procedures for which written consent is normally required outside of the research context.
In cases in which the documentation requirement is waived, the IRB may require the investigator to provide subjects with a written statement regarding the research.

Here there appears to be no provision for informed consent by illiterates, or those willing to participate in research but not willing to document their consent. In this case one would have to argue that fieldwork presents minimal potential for harm to the consultants, and that written consent is not normally required to ask people questions about their language.
In the Canadian legislation, consent must be documented in writing except “in extenuating circumstances, where written communication is not feasible (children, illiterate adults, certain communities), may researchers relay the principles outlined above verbally, the script of which must be provided to the review Committee”. The Helsinki Declaration (1964), which is the first protocol for informed consent and which forms the basis for almost all legislation regarding the use of human subjects in research, does not specify how informed consent must be documented (only that it must be obtained before any research can begin).
If your consultants are literate in the language of the consent document you have no problem, although you should make sure that they’re actually agreeable and not just saying so. Problems can arise if your consultants are not literate or are unwilling to sign (although are willing to work with you). Recording the consent is a way around this – many grant bodies will accept a recording instead of a signed consent form. They often require you to submit a script. If your consent is obtained in another language, you may need to get a certified translation.
A consent document (either a read script or a written form) should contain

  • A brief explanation of your project
  • What the data will be used for
  • Terms of payment
  • Arrangements for return of copies of materials
  • Arrangements for recording
  • A statement that the consultant can cease working at any time and does not have to give a reason
  • That the consultant can request that recording be stopped (and does not have to give a reason)
  • A statement of the intellectual property rights of the consultant and the linguist.
  • arrangements for archiving
  • who is required to give consent and for what portion of the material

Consent forms do not have to be in legalistic language; indeed, they should be clearly worded in a way that the average person on the street can understand.

9.5.4 Restricted material
In Australia (as well as in many other cultures) information is a managed commodity. That is, not everyone knows everything about the culture, and some aspects of knowledge are appropriate knowledge of particular groups within the community. Some stories may be gender-restricted (that is, they may be for men only, or women only). Others may be “public” but not for everyday discussion. Other aspects of knowledge might be revealed only at certain times (for example, there is a common prohibition in South-Western Native American communities against telling stories in the summertime).
These restrictions on knowledge are part of the culture and abiding by them is both a matter of cultural competence and cultural respect. Read the available anthropological literature on the culture you will be working with, to get an idea of the subject areas you should steer clear of. Don’t be offended if you ask a question that can’t be answered.
Himmelmann (1996:XX) argues that any documentation of such knowledge destroys it. That is not necessarily true, but it is a very problematic issue. First, do not go digging for such information; wait for speakers to volunteer it. If you are aiming to produce a description of the language, going after information that you cannot distribute will not aid your documentation. Secondly, if your consultants give you restricted knowledge, find out if they are telling you this as part of the documentation or because they trust you and want to you know about it (but not record it). Thirdly, if they want the restricted information to form part of the documentation, have a plan for how to deal with the information, how to archive it so that the restrictions can be respected, and what they want to happen to it. Some suggestions are

  • recording such information on separate tapes, clearly marked RESTRICTED
  • keeping such field notes separately, clearly marked RESTRICTED
  • archiving the materials with an archive which has provisions for dealing with restricted information
  • discussing the restrictions, such as why your consultants want to make a record of the materials, and what they want you to do with it.
  • discussing what they believe will happen if the wrong people find out about the information.

You will probably learn more than you should about some things, particularly if you are going through old materials and the older researchers did not request the confidentiality rights of the earlier speakers. Be careful who you show those docs to, be careful who knows what you know. For example, in Yan-nha?u culture, men who find out about women’s restricted material (and vice versa) will die after having their throats ripped out by a supernatural being.

9.5.5 If you are refused ethics clearance
The proposal might be given a waiver (meaning that the legislation on the use of human subjects in research has been deemed not to apply), or you might receive conditional approval, absolute approval or rejection. Conditional approval will be accompanied by one or more questions on your methodology; you might be asked to alter some component of your research protocol, or you might be asked for clarification before the waiver or approval is granted.
If you receive a rejection, do not ignore it and go to the field anyway (that’s breaking the law, at least in the USA). Make sure you find out precisely why the refusal was given. Anecdotal evidence from an informal survey suggests that the most common causes of rejection for ethical approval of linguistic projects involve “inadequate” informed consent (such as not having signed consent forms) and “inadequate” protection of anonymity. There are usually processes for appeals.
As the US legislation stands, participants are not required to be anonymous and written informed consent may be waived by an ethics board if they consent to their identifies being revealed and if the research poses no risk to them. In Canada, there are provisions in the legislation for both of these issues, as is the case in Australia.

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