Symposium Participant Control of Genomic Data for Research

Request for Approval under the “Conference, Meeting, Workshop, and Poster Session Registration Generic Clearance (OD)”

(OMB#: 0925-0740, Exp. Date: 07/31/2022)

TITLE OF INFORMATION COLLECTION: Symposium on Participant Control of Genomic Data for Research

PURPOSE:

The goal of the Symposium on Personal Control of Genomic Data for Research is to provide an opportunity, under the auspices of the Cancer Moonshot^SM , for advocates, policy leaders, and the public to discuss the impact of personal control of genomic data sharing to research, clinical care, and participants’ well-being an engagement.

This symposium will host sessions on:

• Motivations for and perceptions of participants controlling their own data,

• Existing approaches and platforms that facilitate personal control of data sharing,

• Risks and benefits to participants and their communities, and

• The role of individuals who wish to share their data in clinical practice and healthcare.

Prospective applicants will be asked to register for the symposium electronically, and those who wish to present a poster during the symposium will also submit an abstract electronically through a symposium webpage on https://events.cancer.gov/participantsharedata.

DESCRIPTION OF RESPONDENTS:

The respondents are from varied groups, including patients and patient advocacy groups; researchers representing various scientific disciplines, and U.S. government policy leaders.

TYPE OF COLLECTION: (Check one)

[X] Abstract [ ] Application

[X] Registration Form [ ] Other: ______________________

CERTIFICATION:

I certify the following to be true:

1. The collection is voluntary.

2. The collection is low-burden for respondents and low-cost for the Federal Government.

3. The collection is non-controversial and does not raise issues of concern to other federal agencies.

Name: Christie Kaefer

To assist review, please provide answers to the following question:

Personally Identifiable Information:

1. Is personally identifiable information (PII) collected? [X ] Yes [ ] No

2. If Yes, is the information that will be collected included in records that are subject to the Privacy Act of 1974? [X] Yes [ ] No

Gifts or Payments:

Is an incentive (e.g., money or reimbursement of expenses, token of appreciation) provided to participants? [ ] Yes [ X] No

ESTIMATED BURDEN HOURS and COSTS

Form	Category of Respondent	No. of Respondents	No. of Responses per Respondent	Time per Response (in hours)	Total Burden Hours
Registration	Individuals	300	1	5/60	25
Abstract	Individuals	30	1	15/60	8
Totals			330		33

Category of Respondent	Total Burden Hours	Wage Rate*	Total Burden Cost
Individuals	33	$24.34	$803.22
Total			$803.22

**Source of the mean Hourly Wage Rate is provided by the Bureau of Labor Statistics, Occupation title “All Occupations” 00-0000, https://www.bls.gov/oes/2017/May/oes_nat.htm#00-0000.

FEDERAL COST: The estimated annual cost to the Federal government is $2,440.16.

Staff	Grade/Step	Salary	% of Effort	Fringe (if applicable)	Total Cost to Gov’t
Federal Oversight
Program Director**	14/9	$148,445.00	1%		$1,484.45
CRTA Fellow***		$48,900.00	1%		$489.00
Contractor Cost					0
Communications Consultant		$46,671	1%		$466.71
Travel					0
Other Cost					0
Total					$2,440.16

**The salary in the table above is cited from https://www.opm.gov/policy-data-oversight/pay-leave/salaries-wages/salary-tables/19Tables/html/DCB.aspx

***The CRTA Fellow Salary is cited from https://www.cancer.gov/grants-training/training/at-nci/crta/crta.pdf, Page 22. The CRTA Fellows attending this event are (Master’s Level or Doctorate Degree Candidates; Category 3 or Category 4’s).

If you are conducting a focus group, survey, or plan to employ statistical methods, please provide answers to the following questions:

The selection of targeted respondents

1. Do you have a customer list or something similar that defines the universe of potential respondents and do you have a sampling plan for selecting from this universe? [ ] Yes [X] No

If the answer is yes, please provide a description of both below (or attach the sampling plan)? If the answer is no, please provide a description of how you plan to identify your potential group of respondents and how you will select them?

Administration of the Instrument

1. How will you collect the information? (Check all that apply)

[ X] Web-based or other forms of Social Media

[ ] Telephone

[ ] In-person

[ ] Mail

[ ] Survey form

[ ] Chart Abstraction

[ ] Other, Explain

2. Will interviewers, facilitators, or research coordinators be used? [ ] Yes [ X] No

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