Rough draft.This research track is under review with Dr. Atit's lab. Content and sequence may still change.
The Baby Mateo Case
Genetics domainMedical Interventions (MI), with PBS overlapLesson 19 of 20Your seat: Bioethicist
Should We, and Who Decides?
Discovery question
Should we genetically intervene in clefting, and who has the right to make that decision?
💡 A sound bioethical position weighs benefit, risk, consent, AND fair access together, and the sharpest line is (not inherited) versus (inherited, broadly restricted) editing.
The plan
Prerequisite check
Before this page, you should know
- treats disease by adding, correcting, or adjusting genes or their products.
- nudges a pathway up or down without rewriting DNA; a Wnt agonist rescued Pax9-null mouse palates in utero.
If not, review
Today's new idea is only
A sound bioethical position weighs benefit, risk, consent, AND fair access together, and the sharpest line is (not inherited) versus (inherited, broadly restricted) editing.
Learn first
What you will learn
Goal: Use a structured reasoning model to weigh versus for clefting against benefit, risk, equity, and consent, and reach a defended position.
Know by the end
- Bioethics is structured reasoning about what we should do in medicine, not just what we can do.
- A edit changes only the patient and is not inherited; a edit changes , egg, or sperm and is inherited by all descendants, which is why is broadly restricted.
- Beneficence weighs benefit against harm, and because CL/P is already treatable by surgery, the bar for accepting experimental risk is high.
- Equity matters: risk variants were studied mostly in European groups, and some high-incidence communities (AI-AN) face documented barriers to ordinary care.
Learn first
Model: An ethics case grid and a real equity fact
For a hypothetical future therapy, the same fix can be delivered two ways. A edit treats the patient's own cells and is not inherited: it could reduce or repair a in this one patient, and any mistakes are not passed on, though edits still affect the patient and human is unproven. A edit changes the and is inherited by all descendants: it could prevent the cleft before it forms and in all future generations, but any error is heritable and permanent, the consent of future people is impossible, and it raises designer-baby and enhancement concerns.
is not the only thing distributed unevenly; so is care. American Indian and Alaska Native communities are described as having among the highest incidence yet face documented barriers to accessing comprehensive cleft treatment. Meanwhile the genetic risk variants themselves were studied mostly in European populations, so even the knowledge base is unevenly built. A therapy offered first only in wealthy hospitals could widen, not close, that gap.
Do the work
Explore (work the model before reading on)
- In the grid, which row's harms can be inherited by people not yet born?
- Name two different things that are unevenly distributed (one about disease, one about who has been studied or treated).
- A edit could prevent a in all descendants. Why does the impossibility of getting consent from those future descendants make this harder to justify than a edit?
- lip and is treatable today with surgery and team care. How does that fact change the ethical case for taking on the risks of an experimental genetic fix, compared with a disease that has no treatment at all?
- Imagine a genetic therapy is invented but is expensive and offered first only in wealthy hospitals. Predict what that would do to the existing gap in cleft care across populations, and explain.
The plan
Guided notes
1
Four ideas for the cleft case
Model start: Bioethics is structured reasoning about what we should do, not just what we can do. Four ideas guide the case.
- ____ is the right of a person (or their parents, for a child) to make informed choices about their own body, which is why is troubling: future generations cannot consent.
- ____ (do good), weighed against harm, asks whether the benefit outweighs the risk; because CL/P is already treatable, the bar for experimental risk is higher.
- ____ asks who actually gets access, since a therapy offered only to the wealthy could widen the existing gap.
2
The sharpest line
- ____ editing changes only the patient and is not inherited, so it is ethically more accepted.
- ____ editing changes , egg, or sperm, is inherited by all descendants, and is broadly restricted or prohibited.
Explore
Reading the Research
What to read
Read the title and the abstract only, not the whole paper. Babai & Irving 2023, Orofacial Clefts: management and surgical treatment (Genes)
Why this source matters
This is the published evidence behind today's idea: A sound bioethical position weighs benefit, risk, consent, AND fair access together, and the sharpest line is (not inherited) versus (inherited, broadly restricted) editing.
Words to unlock first
Reading moves
- Skim the title and abstract first to get the gist.
- Circle the one sentence that states the main claim.
- Box the evidence the authors give for that claim.
- Mark one sentence that confuses you, and move on.
Stop point
You do not need the methods or statistics yet. If a sentence is about lab technique or math you have not learned, mark it and skip it.
Your output
Write one claim-evidence sentence: what this source claims, and the one piece of evidence that backs it up.
Where this fits
Tested on (Ohio WebXam)
Genetics of Disease · 072130
PLTW lesson
MI · Genetics domain · Bioethics of genetic medicine; patient rights
WebXam domain
Bio-Molecular Technology
Evidence to produce
Take a defended position. In five to seven sentences answer the driving question for this case specifically: would you support a somatic intervention, a germline intervention, or neither, given that clefting is already surgically treatable? Use at least two of the four ideas (autonomy, beneficence, somatic vs germline, equity) by name, and cite the equity evidence. There is no single correct answer; you are graded on reasoning.
Lab / skill
Medical Interventions (MI) · Biomedical Innovations (BI)
Explore
Vetted readings for this lesson
- Babai & Irving 2023, Orofacial Clefts: management and surgical treatment (Genes)
- Wolfswinkel et al. 2022, AI-AN access to comprehensive cleft treatment (Cleft Palate Craniofac J)
- Kousa et al. 2017, somatic vs germline framing in IRF6 rescue (Dev Dyn)
- Leslie et al. 2012, IRF6 penetrance and counseling context (Genet Med)
The plan
Track your progress today
Check these off as you work through the lesson, then submit. This tells Mr. Mendoza how you're doing so he can help the class. It does not replace turning in your producible.
Use the code Mr. Mendoza gave you, not your name. Saved on this device.
Check off as you finish
- Read the Model and answered the Explore questions.
- Filled in the guided notes in my own words.
- Defined the new vocabulary with an example.
- Built the producible: Take a defended position. In five to seven sentences answer the driving question for this case specifically: would you support a somatic intervention, a germline intervention, or neither, given that clefting is already surgically treatable? Use at least two of the four ideas (autonomy, beneficence, somatic vs germline, equity) by name, and cite the equity evidence. There is no single correct answer; you are graded on reasoning.
- Wrote my Claim, Evidence, and Reasoning exit ticket.
Pick your period and code first.
Check yourself
Exit ticket (Claim, Evidence, Reasoning)
- Claim: State your position on genetic intervention for this case (, , or neither).
- Evidence: Cite one fact from today's models, for example that ____ communities face documented barriers to comprehensive care.
- Reasoning: Explain your position using at least one named ethical idea (autonomy, beneficence, vs , or ____).
How this is graded (rubric)
For: Take a defended position. In five to seven sentences answer the driving question for this case specifically: would you support a somatic intervention, a germline intervention, or neither, given that clefting is already surgically treatable? Use at least two of the four ideas (autonomy, beneficence, somatic vs germline, equity) by name, and cite the equity evidence. There is no single correct answer; you are graded on reasoning.
| Criterion | Proficient | Developing | Beginning |
|---|---|---|---|
| Complete | Every required part of the artifact is present and filled in. | Most parts are present, but one is missing or left blank. | Several parts are missing. |
| Accurate | The science and data are correct and match the evidence. | Mostly correct, with a small factual slip. | Key science or data is wrong. |
| Scientific reasoning (CER) | States a claim, backs it with specific evidence, and explains the reasoning. | Has a claim and evidence, but the reasoning is thin or missing. | Gives an answer with no evidence or reasoning. |
| Professional communication | Clear, organized, and labeled the way a clinician or scientist would write it. | Readable but disorganized or missing labels. | Hard to follow. |
| Submitted | Turned in the right way (Schoology for routine work) and confirmed. | Turned in, but in the wrong place or unconfirmed. | Not turned in. |
How the model answer scores against this rubric
- CompleteProficient: Nothing is left blank: the model fills every part of "Take a defended position. In five to seven sentences answer the driving question for this case specifically: would you support a somatic intervention, a germline intervention, or neither, given that clefting is already surgically treatable? Use at least two of the four ideas (autonomy, beneficence, somatic vs germline, equity) by name, and cite the equity evidence. There is no single correct answer; you are graded on reasoning.".
- AccurateProficient: Every number and claim matches the case evidence.
- Scientific reasoning (CER)Proficient: It names a claim, cites the specific evidence, and explains the reasoning, not just the answer.
- Professional communicationProficient: It is organized and labeled like a real chart note.
- SubmittedProficient: It would be turned in on Schoology and confirmed.
Explore
Where this leads: careers
Bioethicist Clinical Ethics Consultant
What's next: We have now followed the gene from the first clue all the way to treatment and the ethics of treatment. Nothing is left to add: the only task remaining is to put the whole story together. What is Mateo's complete genetic story, start to finish? We assemble it next.