Assessing Ethical and Social Challenges in Newborn Screening Research

Assessing Ethical and Social Challenges in Newborn Screening Research

Public Square #03Published November 21, 2016
The Prompt: 

This month’s public square focuses on the ethical and social consequences of adding a new condition to newborn screening panels.

It can be hard to know which medical conditions should be added to state newborn screening panels. Experts review pilot studies to weigh the benefits and harms of screening all babies for the new proposed condition. In the past, these pilot studies usually did not explore ethical and social issues. For example, should the state newborn screening program tell a family if their child is a carrier for a disease but does not actually have the disease?

A team of researchers and newborn screening officials wrote ethical and social questions for researchers to include in pilot studies. The table linked below puts these questions in boxes to help researchers think of all the questions that they may want to study. In this public square, we are seeking your input on this table. 

Click here to access and review the table.

1. Are there ethical or social issues we are missing in this table? 

2. Are there stakeholders we are not including that should be added to the table? 

3. Are there questions or sections in the table that are unclear? 

4. Do you have any other general comments about the content or the layout of the table?

Please add your comments and thoughts below. Also, make sure to check back to see other responses and continue the discussion! We appreciated your input and feedback on this important document.

7 comments
Comments are closed. Read the discussion below, or browse other discussions.
The Question: 
What are the ethical and social challenges in newborn screening research?
The Question: 
What are the ethical and social challenges in newborn screening research?
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Aaron Goldenberg Associate Professor at Case Western Reserve University

Welcome to the NBS Public Square. I am an Associate Professor of Bioethics at Case Western Reserve University in Cleveland and Director of Ethics, Practice, and Policy for Baby's First Test. I will be the moderator for this public square event. We are looking forward to an interesting and engaging discussion about the ethical and social issues that are crucial to include within newborn screening research. Please review the table which can be accessed in the description above and let us know what you think.

This table is meant to lay out a number of important ethical and social issues that are raised by adding new conditions to NBS panels. We want to her from you. Please log in and post suggested edits or any comments. You may also post any thoughts or suggestions about the public square itself. We want this site to be a place to come together to discuss important Newborn Screening topics. I am looking forward to our discussion!

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Kimberly Noble Piper

I would add a point for consideration under the population stakeholder group under the Ethical and
Social Issues Related to the Initiation of Screening header.
The general population should be able to have trust that the public newborn screening program is transparent in its operations. Especially as it relates to how decisions and policies are made for new conditions that are are added to mandatory screening programs.
If states mandate that newborns are screened for conditions on its panel, then the public needs to have input into that process.

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Aaron Goldenberg Associate Professor at Case Western Reserve University

Thank you so much for that point KImberly! I absolutly agree with the importance of assessing and assuring public trust in the screening program. Are there questions you think could be asked within a NBS pilot study that could help to assess public trust of the system?

This could also point to the need for general studies on public perceptions/understanding of the NBS program and how to increase public/program dialogue about adding new conditions.

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Anthony Steyermark

I agree with Kimberly Noble Piper about the importance of transparency and public trust in newborn screening. A specific extension of that is at the Population Level under Carrier, where some populations / communities may have a mistrust of government health programs, which makes it critical how the message of carrier status is delivered so that it is not misconstrued.

Also, it may be worth clarifying the "NBS State" stakeholder role. There is "Impact on state services (e.g. Medicaid, public school system)?", but this may not adequately capture the resources and services that an individual needs to reach their best possible outcome. This gets to the difference between available and accessible. While the availability of healthcare services (treatment, clinicians) is considered when exploring new conditions, the accessibility of services (local/state/federal) is rarely considered, and may lead to inequities at the individual and population levels.

Aaron Goldenberg's picture
ModeratorJanuary 17, 2017
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Aaron Goldenberg Associate Professor at Case Western Reserve University

These are important points Anthony. First, I agree that carrier status is going to be an increasingly difficult issues to address as screening expands, and the newborn screening community (especially in the context of pilot studies) will need to address potential community specific trust issues. It may be that some community participatory approach’s would be helpful here to inform nbs research and expansion when these kinds of results may be possible. Second, I think your differentiation between availability and accessibility is also crucial. One of the things I appreciate about the NBS world is its dedication and interest in providing universal access, but as panels expand, there may be challenges in getting services to a much larger pool of families, which as you said could increase disparities. This might be an important area to add to the chart and paper, ie the potential impact on disparities/equity.

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Kelsey Baker

I enjoyed seeing the Public Square in action, as well as the questions and conversations!

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Amy Gaviglio

Sorry I'm late to the game on this one! I think it is a very interesting and needed project! Here are a few thoughts:

1) Is this implying that screening has been mandated for all or might we also want to take into account consent-based additions and the additional burdens that this would cause on health care system and programs.

2) Need to include long term follow-up needs. Would also consider adding something about the costs of monitoring some of these late-onset conditions.

3) Do we need a column for False Negatives?

4) For false positives, some have indicated that these can potentially disrupt the parent-baby bonding process. Should this be added?

5) I completely agree with the previous discussion about equity and access. This is an ongoing issue that is only going to be more difficult with increasingly complex treatments. We struggle with access now even with disorders we've been screening for for decades.

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