Rough draft.This research track is under review with Dr. Atit's lab. Content and sequence may still change.
Craniofacial Research Track
Session 17The Fix, January (intensive)Lens: Biomedical Innovations
Should we? The ethics of editing before birth
Discovery question
Imagine the science worked and Mateo's could be corrected before birth. Should we do it? Who decides, and what could go wrong?
Whether we can edit is a science question; whether we should is an ethics question. Editing before birth raises distinct issues: versus edits, effects, who can consent, and whether access would be fair.
The plan
Prerequisite check
Before this page, you should know
- A is a species studied because its biology is similar enough to ours to teach us about human development.
- Zebrafish and mice build their faces using the same core developmental program (, , and the same key genes).
Today's new idea is only
Whether we can edit is a science question; whether we should is an ethics question. Editing before birth raises distinct issues: versus edits, effects, who can consent, and whether access would be fair.
Learn first
What to learn
Goal: Distinguish from , weigh the main ethical concerns ( effects, consent, equity), and argue a position using evidence in a structured debate.
Know by the end
- edits affect only the treated person; edits change egg, sperm, or and pass to future generations.
- effects are unintended edits at sites that resemble the target, and they are a central concern.
- A fetus cannot consent, which raises hard questions about who decides for it and on what grounds.
- Equity and access ask who would actually get a treatment like this, and whether it would widen or narrow existing gaps.
- Bioethics weighs benefit, risk, consent, and fairness; a strong position uses evidence, not just opinion.
The plan
Guided notes
1
Debate prep: define the terms
Model start: affects only the treated person; changes egg, sperm, or and is passed to future generations, so its effects do not stop with the patient.
- Debate framing: be ready to explain the difference between and , and why raises the stakes.
- Debate framing: define effect and give one reason it makes editing before birth riskier.
2
Debate: the case for, the case against
Model start: For: a correction in the critical window could prevent the from forming at all, sparing years of surgery. Against: effects could cause new harm, and the work is not yet proven safe in humans.
- Argue FOR: build a two-point case that an early correction for Mateo's would be ethical, citing benefit and the critical window.
- Argue AGAINST: build a two-point case that we should not do it yet, citing risk and the fact that this is still research, not proven care.
3
Debate: consent and fairness
Model start: Because a fetus cannot consent, the decision would fall to parents and clinicians, which is why clear limits and oversight matter.
- Debate question: a fetus cannot consent, so who should decide, and what limits would you put on that decision?
- Debate question: if this treatment existed, who would realistically get it, and is that fair? Propose one rule to make access more equitable.
Explore
Reading the Research
What to read
Read the title and the abstract only, not the whole paper. Literature on in-utero and prenatal gene editing (PubMed)
Why this source matters
This is the published evidence behind today's idea: Whether we can edit is a science question; whether we should is an ethics question. Editing before birth raises distinct issues: versus edits, effects, who can consent, and whether access would be fair.
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.
Lab day
Using the database (what to capture)
MedlinePlus
Open the tool Plain-language explanations of a gene or condition, written for patients and families.
When you use this: Use this when a research paper is too dense, or when you need to explain a finding to Mateo's family in everyday words.
What the screen looks like
Step by step
- 1Open medlineplus.gov/genetics and search the gene or condition (IRF6).
- 2Read the summary written in everyday words.
- 3Note the conditions the gene is linked to at the bottom of the page.
Capture these fields
- Topic: IRF6 gene
- Plain-language summary: IRF6 helps the tissues of the face join correctly before birth.
- Linked conditions: Van der Woude syndrome; nonsyndromic cleft
How to read it: Start here when a research paper is too dense. MedlinePlus gives you the gist in everyday words so you can go back to the harder source knowing what it is about.
Lost? About MedlinePlus GeneticsLearn first
Pick your level
Level 1, Guided
Use the sentence starters, a word bank from the vocabulary, a labeled diagram, and the exact source link.
Level 2, Collaborative
Complete a partly blank model or table and explain it.
Level 3, Independent
Make a claim from a new example or an unfamiliar entry in the same database.
The plan
Work as a research team
Team roles
- Manager: keeps the group moving
- Recorder: writes the shared model or table
- Evidence checker: verifies each claim against the source
- Reporter: explains the group's reasoning
Process reflection
- What evidence changed your thinking today?
- What did your group disagree about, and how did you resolve it?
- What question is still unresolved?
Check yourself
Demonstration of learning
By the end of this session, submit ONE of: a labeled diagram with a 2-sentence explanation; a claim, evidence, reasoning paragraph; a completed data table from a real database; or a one-question exit ticket using today's vocabulary.
Meets standard if your explanation correctly connects structure, timing, gene or protein function, or evidence source to Mateo's case: Distinguish germline from somatic editing, weigh the main ethical concerns (off-target effects, consent, equity), and argue a position using evidence in a structured debate.
How this is graded (rubric)
For: Distinguish germline from somatic editing, weigh the main ethical concerns (off-target effects, consent, equity), and argue a position using evidence in a structured debate.
| 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 "Distinguish germline from somatic editing, weigh the main ethical concerns (off-target effects, consent, equity), and argue a position using evidence in a structured debate.".
- 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.