#hrec

Nov. 22nd marked Holodomor Memorial Day in schools, while Nov. 23rd is the day it is recognized worldwide.

The HREC (Holodomor Research and Education Consortium) has released a series of fact sheets to help education about the Holodomor. This first series covers the Holodomor Heroes, specifically the "Truth Tellers" – The first journalists to write about the Holodomor.

Above is the first sheet in the packet about Malcom Muggeridge, "the first western journalist through whose eyewitness reportage the UK first learned about the Holodomor genocide."

In addition, the series also covers:

Gareth Jones, "the first western journalist to describe the Soviet Ukrainian famine — the Holodomor — as a man-made famine. He is often referred to as a ‘Hero of Ukraine.’"

Rhea Clyman, "the First Western Journalist to Expose the Holodomor."

Valentina Kuryliw’s latest book on human rights and the Holodomor titled "The Historian’s Craft Lesson on Human Rights and the Holodomor" will be available for free until the end of November on the Ukrainian World Congress' website. The PDF is available in both English and Ukrainian as well as an English powerpoint.

http://sydney.edu.au/research_support/ethics/human/index.shtml

HOW TO APPLY FOR HUMAN ETHICS APPROVAL

1. Complete the application form

Review the Guidelines for help with specific topics

Download and complete the application form

2. Complete the required attachments

The attachments help the HREC establish whether you are providing participants with enough information to give informed consent.

More information about providing attachments.

3. Submit your application

Submit your application by the relevant submission date.

4. What to expect after you have applied

What happens after you submit your application

GUIDELINES: SNOWBALLING - ACTIVE AND PASSIVE

Snowball recruitment - peer, network, or word-of-mouth recruiting - is acceptable only if it is in the passive form. That is, participants may be asked to discuss the research with friends/contacts that they think may be interested in volunteering to be participants. Those new participants can then be given information and the contact details of the research team so that they may independently volunteer to participate.  Active snowballing - when participants volunteer their friends/contacts or their friends’/contacts’ contact details directly to the research team - is generally not acceptable. 

GUIDELINES: INTERVIEWS AND FOCUS GROUPS

Researchers must provide a list of interview questions, or sample questions/topics, that will be asked.  Interview participants must be informed if they are to be audio or video-recorded during their interviews.  They must also be made aware that they can withdraw at any time and have the material they provided removed and destroyed (if recorded).  For focus group participants, although they can withdraw at any time they must understand that if the focus groups are recorded, they will not be able to request that their answers be erased/destroyed because this would require destroying the material provided by other individuals.

GUIDELINES: LIMITS TO INFORMED CONSENT

Wherever possible, written informed consent of the participant is required. In some special cases it will not be possible to obtain informed consent because a participant is unable to provide it. Such cases would include participants with intellectual or physical disabilities which preclude their doing so. Another example is young children. In these cases, it is essential to obtain informed written consent from an authority who may speak legally and responsibly on behalf of the participant. Where the design includes the “research treatment” of participants who are deemed legally incompetent by the Guardianship Act 1987 (NSW), that Act must be complied with. The HREC acknowledges that there may be experimental procedures which would be altered and defeated if the participants knew in advance what the experiment’s true aim was. This might be the case, for example, in a psychological experiment determining a participant’s emotional responses to particular stimuli. If participants knew what the researchers were testing for, they may alter their true responses. In such situations the HREC adheres to the following guidelines:

Participants should not be subject to any procedure which is reasonably likely to prove either physically harmful to them or of enduring psychological harm (which is distinct from temporary embarrassment, mild alarm, etc.); and

At the close of the experiment participants are to be fully informed (debriefed) as to the true nature of the study and the disposition of the results.

For further information, please refer to Chapters 2.2 and 2.3 of the National Statement on Ethical Conduct in Human Research.

GUIDELINES: EXCEPTIONS TO WRITTEN CONSENT

There are some exceptions to the requirement for written consent.  For example, for some questionnaires the return of the questionnaire can be taken as indication of voluntary consent to participate. This should be clearly stated on the questionnaire, with a statement similar to the following:  "We would be grateful if you would agree to take part in our study by answering all questions and returning the questionnaire to…".

Participant Information Statement and Consent Form not appropriate

In some cases it is not appropriate to provide a written Participant Information Statement and Consent Form.  This may be the case for participants who are illiterate or for participants from certain oral cultures.  In circumstances such as these, a version of the Participant Information Statement and Consent Form should be read to participants.  Researchers should include a proposed statement indicating how they would begin such a dialogue. In these cases, consent may be obtained orally and audio-recorded. It is of course imperative that participants understand exactly what is expected of them and to what they are consenting.

GUIDELINES: REFERENCES

The HREC requires that you provide the citations for at least four academic references in your application.  This enables the Committee to assess whether researchers:

know where their research ‘fits’ within current research in their fields

know how their research may add to the existing knowledge base

GUIDELINES: QUESTIONNAIRES AND DE-IDENTIFICATION

Whenever possible, questionnaires should be anonymous.  When it is necessary to cross link questionnaire answers to other data it is better to have a research project identifier than to have a generic identifier such as the subject's/participant's name or Student I.D. number.  If it is necessary to link the answers to student performances then only the Student ID number (without name) should be used. Where access to student records is required, written permission must be obtained from the University Registrar. Researchers should provide copies of all questionnaires to be administered in the research project to the Committee for review, and the application should clearly state whether the questionnaires will be anonymous, de-identified, or de-coded.  In the case that a questionnaire is answered anonymously, it is not necessary to obtain participant consent; completion of the questionnaire is taken as consent. In this case, participants must be informed via the Participant Information Statement that provision of the questionnaire is taken as consent, and that it is therefore only possible for participants to withdraw prior to handing over the completed questionnaire.

GUIDELINES: COPYRIGHT

For original material such as video or audio tapes, diaries, etc., the copyright must always remain with the participants and not with the research team.  For certain forms of collected material where there are caveats placed on viewing the original material - such as only for women or only for a specific religious group, etc. - the caveats must be adhered to absolutely.

GUIDELINES: DATA RETENTION

Data must be recorded in a durable and appropriately referenced form.

How long

While Section 2.1 of the Australian Code for the Responsible Conduct of Research states that all research data are safely retained for periods of at least five years, the University of Sydney requires all research materials to be retained for a period of 7 years.  Clinical trial material must be retained for at least 15 years after completion of the study. 

Location

Wherever possible, a copy of the original data should be retained in the department or research unit in which they were generated. During the active phase of the research it is acceptable for the data to be held temporarily off campus by members of the research team for research purposes, such as data analysis. Following completion of the active phase, all research materials must be retained at the University of Sydney or affiliated research institutes. Data obtained from limited access databases or in a contracted project may not be able to be retained. In such cases, a written indication of the location of the original data or key information regarding the limited access database from which it was extracted must be kept in the department or research unit.  Individual researchers should be able to hold copies of the data for their own use. Nevertheless, it should be understood that retention solely by the individual research worker provides little protection to the research worker or the institution in the event of an allegation of falsification of data.

Video and audiotape

Video and audiotape records should not be erased after the data has been transcribed to digital form. Like all other research materials, these should be retained for the requisite seven years.

Identification

Any identification codes should be stored in a separate place from the data records to which they are linked.

SUBMISSION

Applications must be received by the submission deadlines in order to be considered on the date of the next meeting. Applications are reviewed at Committee meetings and a response is usually provided within 10 working days.

Submission of new applications

Submission of modifications and recognition of external approval

Clinical trial submission dates

Submission of new applications

All new applications to the University of Sydney Human Research Ethics Committee (HREC) should be submitted by the following deadlines. Low Risk applications are triaged by the Human Ethics.

What you need to provide:

A PDF copy of your application, including all attachments and signatures, submitted via email [email protected] or on a CD submitted in person or by mail.

1 unstapled original printed copy, including all attachments and signatures

8 double-sided stapled printed copies, including all attachments and signatures (Note only one copy of a grant application (if applicable) is required. This should be printed double-sided and attached to the original copy).

Human Research Ethics Committee MEETING DATES FOR 2012

(found on the website..)

SUBMIT TO:

Human Research Ethics Committee Level 6 Jane Foss Russell Building – G02 The University of Sydney 2006 The PDF may be submitted [email protected] on a CD to the address above.