May 4, 2023 Council Meeting

The Members of the National Council on Disability (NCD) will hold a quarterly business meeting on Thursday, May 4, 2023, 12 p.m.–4 p.m., Eastern Daylight Time (EDT).This meeting will occur via Zoom videoconference. Registration is not required, but appreciated on our Eventbrite page. Interested parties are encouraged to join the meeting in an attendee status by Zoom Desktop Client, Mobile App, or Telephone to dial-in. To join the Zoom webinar, please use the following URL: https://us06web.zoom.us/​j/​81048854248?​pwd=​bEQ2T2M4UkltdmdKU3hoUEhXYy9SZz09 or enter Webinar ID: 810 4885 4248 in the Zoom app. The Passcode is: 591696. To join the Council Meeting by telephone, dial one of the preferred numbers listed. The following numbers are (for higher quality, dial a number based on your current location): (309) 205 3325; (312) 626 6799; (646) 876 9923; (646) 931 3860; (301) 715 8592; (305) 224 1968; (669) 444 9171; (669) 900 6833; (689) 278 1000; (719) 359 4580; (253) 205 0468; (253) 215 8782 or (346) 248 7799. You will be prompted to enter the meeting ID 810 4885 4248 and passcode 591696. International numbers are also available: https://us06web.zoom.us/​u/​kiRIRMWTy.

In the event of audio disruption or failure, attendees can follow the meeting by accessing the Communication Access Realtime Translation (CART) link provided. CART is text-only translation that occurs real time during the meeting and is not an exact transcript.

MATTERS TO BE CONSIDERED:Following welcome remarks and introductions, the Executive Committee will provide their report; followed by a policy briefing on NCD’s Impact of Extreme Weather Events on People with Disabilities report; break; Chairman’s report; policy updates; a Progress Report process discussion; and public comment session on the impact of genetic editing and fetal medicine on the future of people with disabilities, before adjourning.

Agenda: The times provided below are approximations for when each agenda item is anticipated to be discussed (all times Eastern Daylight Time):

Thursday, May 4, 202312:00–12:10 p.m.—Welcome and Call to Order

12:10–1:00 p.m.—Executive Committee Report

1:00–2:00 p.m.—Policy Briefing: NCD’s Impact of Extreme Weather Events on People with Disabilities Report

2:00–2:10 p.m.—Break

2:10–2:20 p.m.—Chairman’s Report

2:20–2:40 p.m.—Policy Updates

2:40–3:00 p.m.—Progress Report Process Discussion

3:00–4:00 p.m.—Public Comment

4:00 p.m.—Adjourn

Public Comment: Your participation during the public comment period provides an opportunity for us to hear from you—individuals, businesses, providers, educators, parents and advocates. Your comments are important in bringing attention to issues and priorities of the disability community and informing the work of NCD.

For the May 4 Council meeting, NCD will have an extended public comment period of one hour and requests comments from the public regarding the impact of genetic editing and fetal medicine on the future of people with disabilities. Additional information on specifics of the topic is available on NCD’s event page at https://ncd.gov/​events/​2023/​upcoming-council-meeting.

Because of the virtual format, the Council will receive public comment by email or by video or audio over Zoom.

NCD now requires advanced registration to provide public comment during a Council meeting. Interested parties may register by sending an email to PublicComment@ncd.gov with the subject line “Public Comment” and your name, organization, state, and a brief summary of the comments you intend to make in the body of your email. Deadline for registration is May 3, 8:00 p.m. EDT. All individuals desiring to make public comment are strongly encouraged to read NCD’s guidelines for public comment in advance of the meeting at: https://ncd.gov/​events/​2023/​upcoming-council-meeting.

NCD will call upon as many individuals who registered as possible as time permits. All individuals called on to make comments will be allotted three minutes to speak and then will be asked to stop. Due to time constraints, NCD makes no guarantee that those who register will be able to provide comments during the public comment session, however, all public comment submissions sent via email will be collected and provided to the Council at the conclusion of the meeting. While public comment can be submitted on any topic over email, comments during the meeting should be specific to genetic editing and fetal medicine, as the input is needed for an upcoming report. If commenters speak on another topic at the meeting, they will be asked to stop out of courtesy to those who came prepared to speak on the topic. If any time remains following the conclusion of the comments of those registered, NCD may call upon those who desire to make comments but did not register.

CONTACT PERSON FOR MORE INFORMATION:Nicholas Sabula, Public Affairs Specialist, NCD, 1331 F Street NW, Suite 850, Washington, DC 20004; 202–272–2004 (V), or nsabula@ncd.gov.

Accommodations: An ASL interpreter will be on-camera during the entire meeting, and CART has been arranged for this meeting and will be embedded into the Zoom platform as well as available via streamtext link. The web link to access CART (in English) is: https://www.streamtext.net/​player?​event=​NCD.

If you require additional accommodations, please notify Netterie Lewis by sending an email to nlewis@ncd.gov as soon as possible and no later than 24 hours prior to the meeting.

Due to last-minute confirmations or cancellations, NCD may substitute items without advance public notice.

NCD Public Comment Guidelines

Next Public Comment Opportunity:

May 4, 2023, 3:00 PM – 4:00 PM, Eastern

Format: Virtual format – the Council will receive public comment by email or by video or audio over Zoom

Topic: Germline editing, fetal medicine, and their impact on people with disabilities (See specific questions for )ASM1

For those interested in commenting, please read the guidelines in full. Advanced registration is required.

General Background:

NCD welcomes the input of the public throughout the year to help inform the Council Members of concerns of the disability community so that their research and recommendations to policymakers reflects the priorities of the community. At any time, individuals and organizations may submit public comment on any topic of concern to PublicComment@ncd.gov.

Four times a year, NCD hosts quarterly Council meetings, during which NCD designates a period of time to receive public comment, either in-person, or via audio or visual through Zoom virtual meeting platform. For these meetings, NCD often selects a topic on which to receive targeted public comment, usually in line with a project that the agency has underway.

Guidelines:

1. Advanced registration is required to make public comment at a quarterly meeting. To provide public comment during an NCD Council Meeting, NCD now requires advanced registration by sending send an email to PublicComment@ncd.gov with the subject line “Public Comment” and your name, organization, state, and topic of comment included in the body of your email. Deadline for registration is the night before the meeting, by 8:00 p.m. EDT. All individuals desiring to make public comment are strongly encouraged to read NCD’s guidelines below for public comment in advance of the meeting. 
2. NCD cannot guarantee all who register will be called upon. NCD will call upon as many individuals who registered as possible as time permits. However, all public comment submissions sent via email will be collected and provided to the Council at the conclusion of the meeting.
3. All individuals called upon to make comments will be allotted three minutes to speak. Due to time constraints, at the end of three minutes, individuals making comment will be asked to stop speaking. 
4. Council Members will not respond to questions or engage in discussion with commenters. NCD’s public comment periods are opportunities for the Council Members appointed by the President and leadership in Congress to hear from the agency’s stakeholders. Council Members will not entertain questions from the public nor engage in discussion with those who seek to make comment. 
5. Comments must be specific to the selected topic for the meeting. While public comment may be submitted on any topic over email, comments received during NCD meetings should be specific to the topic selected for the meeting. Those who make comments on topics other than the selected topic may be asked to stop speaking. 
6. If there is time remaining, those who did not register can indicate interest in being selected to speak and may be called upon at the discretion of the agency

Additional Details for May 4 Public Comment Session:

Asking the Disability Community: What are the ethical bounds of using medical interventions to prevent disabilities prenatally?

NCD is currently undertaking research on the concepts, history, arguments, science, and consequences of fetal medicine interventions and future germline editing on the lives of unborn people with disabilities. NCD recognizes that disability is a cultural identity for many people, and we are undertaking this project in recognition of that identity and to ensure it is preserved as technology continues to advance.  

The report will be the next installment in NCD’s Bioethics series, begun in 2019. Germline editing is technology that changes the DNA in an egg, sperm cell, or early embryo to prevent a disability from occurring. This technology could change the DNA of every cell in a human so that the disability is removed entirely from the individual and also removed from their reproductive cells for future generations. This technology could also be used to cause a disability to occur. This could include any range of conditions determined to be disabilities, such as Tay Sachs disease, Down syndrome, Deafness, dwarfism, or blindness.

Fetal medicine is a medical intervention while a baby is in the womb that can help prevent certain disabilities or lessen the impact of issues related to disability. For example, fetal surgery can be used prenatally for some babies with Spina bifida to close the opening in the baby’s back to reduce the need for a shunt and improve chances for walking.

The proposed research will seek opinions from experts in biomedicine, genetics, fetal medicine, disability rights law, biomedical ethics, and disability stakeholders (including people with these disabilities as well as parents of children who have prenatally diagnosed disabilities and inheritable diseases).

We have reserved an hour to receive comments. Those who intend to make comments should familiarize themselves with NCD public comment guidelines below in advance of the day for comment.

NCD desires public comment in response to the following questions:

Questions:

1. What impacts do advances in the gene editing and fetal medicine technologies have for the future of the disability community?
2. Which of these technologies do you think are completely out of bounds, should be used with parameters, or should be used regularly?
3. If you indicated that any of the technologies should be used with parameters, what legal and ethical parameters should be put in place to make sure the use of the technology is equitable toward people with disabilities? 

Definitions for use with the questions:

• Germline gene editing – technology that changes the DNA of every cell in a human so that the disability is removed entirely from the individual and also removed from their reproductive cells for future generations. This could include any range of conditions determined to be disabilities, such as Tay Sachs disease, Down syndrome, Deafness, dwarfism, or blindness.
• Somatic gene editing – technology that changes the DNA of some cells in an individual but not their reproductive cells. Examples would be correcting the blood cells in people with Sickle cell anemia to improve health outcomes or retinal therapy to remove blindness.
• Fetal medicine – medical interventions while a baby is in the womb that can help prevent certain disabilities or lessen the impact of issues related to disability such as closing the spinal cord opening in people with Spina Bifida

Guidelines for Presenting Public Comment:

1. NCD’s public comment session during our quarterly council meeting is an official government proceeding to receive input from the public. Please be considerate and use proper decorum.

2. All public comment submissions received electronically or in person during the meeting are collected specifically to inform the Council, staff and its work.

3. Due to our time constraints and to facilitate a smooth comment period, advanced registration is required.

4. To preregistration to present comments on the specified topic during the public meeting, sending an email to PublicComment@ncd.gov notifying NCD of your intent to present during the meeting, Include name, organization representing, Specific topic. 

5. Individuals must preregister, but can either submit their written statement at that time or following their preregistration email.   

6. If you cannot attend the meeting or prefer to submit comment without presenting them, please submit written public comment submission to PublicComment@ncd.gov.

7, General public comment submissions will still be accepted and collected for the Council, but only those presenting on the specific topic will be allowed to present during this meeting.

1. When the Public Comment session begins, please be available and prepared to present your comments when called upon.

2. Those preregistered will be placed in a queue and will be called upon to present their comments.

3. When a person called to present, their mic and video will be unmuted and they will be asked to begin.

4. Comments will be limited to three minutes. Warnings will be given before the end of the three minute time, and presenter will be stopped at three minutes. 

5. If any time remains following the conclusion of the comments of those registered, NCD may call upon those who desire to make comments but did not register.

6. The public is welcome to provide additional public comments after the meeting to PublicComment@ncd.gov.