Disclosure/Consent

Security and Privacy

It may be difficult for a dance teacher, dancer, or non-medical professional involved with dancers to understand why screening information is so strictly controlled when [#musicians#] are so 'public' in their profession. Dancers are always showing their bodies in public and what they can do.

The answer is because this kind of data about any particular dancer can only be acquired through direct disclosure by the dancer or by direct personal contact with the [#musician#] often times by a qualified individual such as a medical professional. Therefore, federal guidelines define this kind of data as private medical information and as such the Dancer Wellness Project (DWP) and all affiliates must remain compliant with all applicable federal, state, local, and institutional guidelines.

The DWP utilizes stringent data protection mechanisms and adheres to US federal guidelines (Human Subjects Institutional Review Board-HSIRB/Health Insurance Portablity and Accountability Act HIPAA) pertaining to the protection of human subjects. However, before any affiliate begins any data collection, there must be clear understandings on what the necessary local data controls are to be in order to ensure that all necessary data security and privacy measures are in place.

Important The DWP, nor any other affiliate of the DWP, can be held responsible for breaches in data security and/or privacy.

Each affiliate may institute different measures depending on the particulars of the situation and any applicable institutional requirements. Even though this section details some general considerations, this information cannot be considered universally applicable in all situations. Therefore, you are encouraged to consult with your institution to discuss any relevant issues.

Human Subjects Institutional Review Board (HSIRB/IRB)

It is always highly recommended that Institutional Review Board (IRB) or equivalent human subjects research ethics approval be secured. Because the data collected via the screen and other parts of the DWP are considered personal and private medical information, this approval means that the DWP has met all local requirements. This IRB approval will help provide the necessary protection for the dancer and the affiliate by ensuring compliance with all applicable laws. Additionally, a locally acquired IRB approval will allow for research to be conducted on the data collected and the possible sharing of data with other affiliates.

An Ethics Review approval is required if you wish to conduct research, publish your data, and/or share your information with other participating affiliates.

The IRB application may be considered laborious; however, it should not be a deterrent in conducting a screen. History has shown that screening outcomes are exceptionally beneficial to the dancer and the affiliate. IRB applications may also be difficult to complete especially if you are not familiar with medical and/or research processes or language. However, most affiliates of the DWP have IRB approval and many members at these affiliates are happy to assist in your IRB application process.

If an affiliate does not have access to an IRB granting body, it may be possible to 'umbrella' an affiliate under the IRB approval of another affiliate.

Informed Consent

Through the IRB application, an Informed Consent Document (IC) will be developed and most IRBs will have templates available for the creation of this document. Additionally, many affiliates of the DWP will be happy to share their ICs to aid in the development of your IC.

It is highly recommended that applicable HIPAA language be incorporated into your IC. Many IRBs will require such language to be incorporated and many IRBs will provide the necessary templates. You can also review how other affiliates have incorporated such language into their respective ICs.

In general, the IC will disclose to the dancer:

What they are being asked to do (what procedures/tests are going to be done)
What data is being collected about them
That the data collected about them will be completely confidential
What the risks of participating in the project are for them
What the benefits are for them
Who will have access to this information
What will be done with this data
What, if any, compensation there is for them for participating
That their participation is strictly voluntary
That there are no penalties imposed on them should they not provide consent or should they later elect to no longer participate in the project
That they will be given a copy of the IC for their records
Who they may contact if they have any questions or concerns

Each dancer must be given this IC prior to the commencement of any data collection with ample time for them to review the document and ask any question they may have. (The IC may be emailed to those being screened in advanced to avoid delays the day of screening.)

Each signed IC must be securely stored (e.g. locked filing cabinet) and separate from any data collection documents.

IRBs and Medical Professionals

When a medical professional, e.g. physical therapist, athletic trainer or physician, is involved in any screening project, it is very important to stress in the IRB application process and to the medical personnel involved in the screening that the screening process should be used only for screening.

Hint: The screening should not be used as a time for treatment!

Dancers who wish to seek treatment and/or further consultation with any of the medical professionals about any particular issue identified during the screening process should do so separate from the screen.

Non Biomechanical Assessments

The DWP also has other online screening tools that affiliates can use. These screen tools are presented to the dancer when they review their profile for the first time and allow dancers to provide this self-reported data privately.

If an affiliate chooses to utilize these types of screening tools, some IRBs may require full explanation of how individuals who are identified as being at risk are assisted. If an individual is identified as being at risk, then it is recommended that they be notified in private of the results and referred to qualified resources, e.g. nutritional counseling, should they wish to pursue counseling. This information, along with any other screening information, must be kept in the strictest confidence.

If there is a member of your medical team who is qualified to address such situations, then this should be disclosed to the IRB as well as to the dancer.

If you do not have access to such resources, then the online screening tools can be modified to exclude these additional screening tools.

Academic Environments

When setting up a screen within a school or university, there may be situations in which IRB approval is not required. If a screen is a requirement of a class or as a department/program requirement or is offered as a service to the students, then this information could be considered 'student or class data' and all applicable FERPA (Family Educational Rights and Privacy Act) laws would then apply to this information. However, in these situations, it is highly recommended that you consult with your institution to address any institutionally specific guidelines.

Though the students in the class may benefit from the DWP outcomes, none of the data collected in such situations where IRB approval is not granted and informed consent is not provided can be used for research or any kind of publishing purposes. When discussing these issues with the applicable academic unit and/or research ethics boards, clear description of the project and data usage will be needed. Additionally, the department must discuss and clarify before any data is collected which departmental individuals are to be given access to what portions, if any, of the students' screening data. It is highly recommended that this be disclosed to each dancer/student.

Additionally, if an affiliate has IRB approval and the dancer/student has provided IC, this IC must be stored separate from any student files. Likewise, any data collection documents must be stored separately too.

In situations where screening is mandatory, it must be stressed to each dancer that participation in the research component is absolutely optional.

Important Forced participation in any research is strictly prohibited and illegal.

The DWP supports the delineation between consented and non-consented data. [#Musicians#] may make use of their own personalized profiles regardless of whether or not they provided consent.

Coercion

Another important consideration when seeking consent from dancers in an academic environment is that of coercion. If the principal investigator of an IRB approved project is also one of their teachers in a class, then the dancers may feel 'pressured' to provide consent for fear that not providing consent would have a negative impact on their class evaluation. Many IRBs may ask for details on how this situation is to be addressed.

Summary

IRB approvals are required if an affiliate wishes to use the data collected for publishing, research purposes, or any kind of data sharing with other affiliates. An IRB approval will help ensure that the dancer and the affiliate are protected by ensuring compliance with all applicable laws. IRB applications can be time consuming and tedious however, many members of DWP affiliates are willing to assist you in your IRB application.